Hormonal Changes in Women

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  • #40457

    admin
    Participant

    Welcome to the Hormonal Changes in Women Forum

  • #42401

    Anonymous

    Looking forward to learning more tips on dealing with hormonal migraines!

  • #42402

    Laura
    Participant

    My migraines began in peri-menpause and continue post-menopause. Anyone else have any experience with like that?

  • #42403

    glittereyes
    Participant

    my migraine always rears its ugly head when i have my period….i am sensitive to sound (jump at the least noise) weakness down left side of my body, twitching body, ear pain, pressure in eye…

  • #42404

    Sandy
    Participant

    Hi ALl!! I’m new here, so Hi!! I’ve had migraines since I was six after a motor vehicle accident: pedestrian verses school bus. My little 6 yr old body was the pedestrian & it happened on Fri 13th! I had a few headaches after that in my teens & twenties but then NOTHING for 20 yrs until…perimenopause!!!! Now I have a migraine of varying intensity everyday!! I know it’s the hormonal changes in my body but 3 doctors have told me no. HELP! I need a better treatment plan for during a flare up when my usual standby’s don’t work. Sandy

  • #42405

    Ellen Schnakenberg
    Participant

    Sandy, are you seeing a headache specialist for your Migraines?

  • #42406

    Anonymous

    I don’t know if this is the right category for this but… I am now 32 and have had migraines since the age of 8 and endometriosis since the age of 15 (fun combo!) Anyways the endometriosis has gotten really bad and after 4 laprascopic surgeries over 6 years the doctors are really pushing the hormonal drug lupron (although my neurologist has not been included in this discussion yet). I am terrified to go this route since I finally have a good migraine control plan (lamictal, beta-blocker & vitamin D & trigger avoidance). Has anyone ever taken Lupron? How did it impact your migraine disease? Complicating matters is the fact that I have angina and cannot take triptans! Any input is GREATLY appreciated!!!

    Jamie

  • #42407

    Ellen Schnakenberg
    Participant

    Jamie, Lupron is similar to a drug that I took called Zoladex (Goserelin). Lupron sadly, has more side effects, so you might ask about Zoladex as an option. These drugs allow you to “try before you buy” a hysterectomy. In your case they have not yet told you this is something you need to consider, so that is a good thing. It will deplete your body of reproductive hormones rather quickly, so if you’re going to have trouble with it, you’ll know fairly soon. The trouble with these drugs is that you’re stuck with them for at least a few weeks once you take them. That said, add back hormones can sometimes alleviate Migraine issues. This can sometimes be a good thing, sometimes not. If your Migraine trouble is because of fluctuating hormones, this will allow you to eliminate fluctuations, especially if your add back is in the form of a patch. If your Migraine issues are a result of low estrogen, then you might be in trouble. If they are a result of high estrogen, then you might be pretty well off. You just won’t know until you try it.

    Like you, I can’t take DHE or Triptans, so good management for me is vital. I also had a precanerous condition as well as endometriosis and PCOS, so needed to take things very seriously.

    For me, the Zoladex showed me that low estrogen was a big issue. I added back HRT and did a little better, but could never add back enough to make me feel good due to the other issues. I ended up w/ surgery anyway, but at least I knew up front what I needed and that I had tried everything I possibly could.

    Eventually the hrt caused the Migraines (estrogen receptor downregulation) and now I can’t have any hrt. I’m only 47, post menopause for multiple years and suffering complications as a result of hormone depletions. The endometriosis is gone, but I’ve exchanged other trouble for it instead.

    I don’t know how old you are, but they were pushing for surgery for my endometriosis from the time I was 20. I had a few before relenting to the zoladex and hysterectomy and was glad I held back for as long as possible. For me, this was the right route. An occasional endometrial ablation and removal of scar tissue and cysts was easy compared to being without hormones… for me. This is of course completely retrospective.

    Have you considered trying Depo-Provera? This can also be very helpful for both endometriosis as well as Migraine for some patients and less harmful to the body. It too is reversible. Just a thought…

  • #42408

    Anonymous

    Thank you Ellen for your quick response! I have not heard about Zoladex…I will add that to my list of things to ask about.

    I will be 33 this fall. (they have talked about a hysterectomy after 35, but I am not ready to go there yet unless I really have to).

    I was actually on depo-provera for years prior to my first surgery. My Ob/Gyn was insistant my symptoms were not due to endometriosis because the depo should have been controlling it. Finally when everything else failed she did the laproscopy and was very surprised to see that much endo in someone that young (I was 24. Oopps! I was wrong I have had 4 laps in 9 years now..not 6). It is believed that the endo was non-responsive to the depo-provera.

    I did have a slight increase in headaches with the depo-provera…and I had worse auras while I was on it.

    I am thinking my migraines are more the result of low estrogen…since while I was pregnant I did not have even ONE. However, I had a lot of other issues during my pregnancy due to extremely high hormone levels.

    Thank you for your input…I have more to consider now.

  • #42409

    Ellen Schnakenberg
    Participant

    You’re welcome Jamie 🙂 I have had a run of doctor trouble in my life, but I really lucked out with an incredible GYN who specializes in endometriosis and was very well known in his field of expertise. He sits, listens and talks and thinks outside of the box. If you come up with other questions, just ask…

  • #42410

    june
    Participant

    I started having migraines during my childbearing years. I would always a migraine at the end of my period most every time it would be the last day of my period. Due to excessive bleeding and after exhausting all other measures, I had to have a hysterectomy when I was 40. I did keep my ovaries. Immediately following my hysterectomy I began having 2-3 migraines a week. After about 6 mos when it seemed my hormones had settled from the surgery – I fell back in to my old pattern of once a month migraines. Therefore, even though I do not have a “period” anymore I am assuming because I have my ovaries and I am still ovulating that my migraines are still hormone related. I have Raynaud’s so I can no longer take the triptans. This so disappointing because Maxalt worked perfectly before my surgery now when I take it it causes severe chest pain. I take fiorecet once a month when I get the migraine but it really does not stop the migraine or migraine headache it just sedates me. Anti inflammotories do seem to work on some level. Any ideas or suggestions?

  • #42411

    Ellen Schnakenberg
    Participant

    June, I don’t see anything here mentioned about prevention – are you seeing a headache specialist who can help you work with preventative medications or other tricks to help you get better management of your Migraines? For example, some of the things I’ve written about earlier in this thread may be helpful for you and your doctor to consider and discuss.

    The fact is, you still have your ovaries and they are producing the hormones that are potentially triggering your attacks. I’m not saying to get rid of your ovaries – frankly, that rarely is effective and often is destructive. It may be that something simple as controlling your cycle may be enough to cut your attacks down to one every 4 months or so. This may require the guidance of a headache literate GYN.

    Your hormones cycle throughout the day and the month. The fact that you are getting them as your body prepares to cycle again is a clue to your doctors what might be triggering them. Looking at your hormones when you are at that point in your cycle, and comparing them to your levels when you are Migraine free may be a good place to start.

  • #42412

    Sarah Whiddon
    Participant

    I use to have Epilepsy. When I had them I had an aura in my stomach. I had brain surgery in February 2000. After my brain surgery it flip flopped to menstrual cramps. I went 6 years with no other head issue. Then in February 2006 I had a 5 day migraine right after I finished my period. I went for 2 years with just a major headache, no other symptoms. Then in September 2008 I litterly got sick to my stomach from the migraine. Ever since then I feel sick to my stomach from the migraine. I get migraines every single month around my period time.

  • #42413

    Ellen Schnakenberg
    Participant

    Sarah, because Migraine is actually a neurological disease it can result in strange symptoms that can seem to be in unrelated parts of the body. Gastric stasis, nausea and vomiting is a frequent part of this process.

    It does seem like it is very possible that a change in estrogen or progesterone levels may be a big trigger for you. Have you discussed these issues with your gynecologist? There may be a way to stabilize those levels enough to minimize it’s triggering effects. Because of the timing you describe, I would guess that it may be that your actual trigger is an increase in estrogen which begins to climb after your period. It might be that a blocker may be helpful IF the attacks are severe enough to warrant this type of fairly extreme treatment. It is good to remember too that blocking your hormones for a month may even help your doctor diagnose your trigger. This can sometimes be helpful because your gynecologist may have other ideas once he can identify the actual problem.

    Have you talked to your doctors about this yet? Do you think this information may be helpful to begin a conversation with them?

  • #42414

    sarahwhiddon
    Participant

    I sometimes get the migraines right before my period and during also, but most of the I get the migraines right afterwards. I kind of talked with my gynecologist, but not thoroughly. Since I prefer female doctor I think I can talk to her about my migraines.

  • #42417

    Ellen Schnakenberg
    Participant

    Sarah, this may indicate then that – provided hormonal changes are acting as a trigger – it may actually be the fluctuations themselves that are the problem. Really, only your doctor can tell you for sure. Your gynecologist is a good place to start, but don’t forget the importance of seeing a headache and Migraine specialist if you need additional help, okay? 🙂

  • #42418

    gypsy
    Participant

    Hi Ellen.. I’ve been reading these post here and I too suffer with these same issues… I just want your opinion on the med zoladex you were talking about…I’m 33yrs. old and have only 1 ovary.. i have been suffering for 10yrs now with debilitaing migraines I feel due to fluctuating hormones… I have tried HRT’s with no help.. I get migraines around ovulation bad..2 days or so.. and then again right before my period and during.. so I dont know what I could do considering when estrogen rises during ovulation I get them and then when it falls I get them..(Around and during period) Whats your opinion on this? I only took HRT(prog.&est.) after ovulation up to my period.

  • #42419

    Ellen Schnakenberg
    Participant

    GYPSY – understand, you really need to be seeing a headache specialist for advice. That said, to me it sounds like it might be the fluctuations that could be a trigger for you. Eliminating fluctuations may be helpful. Have you tried that approach yet? Have you tried a progesterone only approach? What is your doctor telling you?

    I found Zoladex to be very difficult. It helped my endometriosis and other repro issues, but my Migraines increased, became chronic and intractable. It was a struggle to get from one day to the next sometimes. That – for me – was because I needed more estrogen than my add back therapy was giving me.

    The only way to know how you will feel on a drug such as Zoladex is to give it a try. When I was on it, there were two options – a 30 day implant and a 3 month implant. The 30 day version gives the opportunity to give it a try short term without committing to such a long term. If you consider 30 days to be a short term 🙂

    Your GYN is probably the one best qualified to help you with considering this drug or another like it, but I would encourage you to utilize a headache specialist as well, in a team approach. When I had mine done, it had the best side effect profile considering everything I was dealing with.

  • #42420

    gypsy
    Participant

    Hi Ellen..I know a headache specialist is best.. I’m just trying to get ideas in my head for discussion reasons.. seems like I have to bring up ideas to help me anymore with dr.’s than they having any.. I have had both estrogen and prog. check and they said they were both low…I was on prog. and testerone for 3mos and it didnt seem to help.. but what approach would stop the fluctuating you were talking about? Would it just be the adding progesterone? One gyn. told me after putting me on est.& prog. for 10days out of the month and it didnt work that theres nothing he can do..grr.. and than the other I have an appt. soon with, she had me on the prog…I do not have a headache specialist.. Question.. when they put you on zoladex therapy,,do they give you any add back therapy? I dont know.. i just want to find something to where I can work again and have a functioning life..trying to find a starting point.

  • #42421

    rachmelrose
    Participant

    Hi, I’ve suffered from migraines since I was 18 and they are somehow linked to my period. During the week of my period the frequency and severity of my migraines increases massively, but lately this has extended until after my period has actually finished. I’ve tried different contraceptive pills and ‘cycling’ to avoid my period with no success (the bad stage happens even without my period). The long duration of my ‘bad’ migraine stage, and the fact that cycling hasn’t worked, makes me suspect it’s not hormones but something else related to my period that’s the problem? Is this possible? Perhaps low iron or something of that nature?

  • #42422

    Ellen Schnakenberg
    Participant

    GYPSY – Yes, when I was on Zoladex I tried to go without add back therapy, but my Migraines were being triggered by low estrogen at the time, so this was more than a little problematic. I became intractable and the only thing that helped was high dose steroids which was not an option.

    I am wondering why your GYN put you on Progesterone and estrogen only 10 days of the month?

  • #42423

    Ellen Schnakenberg
    Participant

    RACHMELROSE – of course hon. It could be a combination too. It could also be something else that is happening around that time exacerbating the problem.

    There are many hormones that fluctuate in our bodies, and it’s always possible that something with one of them is triggering your attacks. Have you had a complete hormone work-up to see where you are at when you feel good, and when you are Migraining?

  • #42424

    gypsy
    Participant

    Thanks for the response.. My gyn put me on the prog. and estrogen 10 days only because he said that was the only time for me to take it… after ovulation and before my period..I dont necessarily believe that.. the first gyn. I went to had me on progesterone all month long until i started my period..but still i had the migraines… right now I’m trying a herb called Dong Quai to see if that will help any before I have to make the decision to be on other meds for these migraines…I know its my hormones because I have got them tested and they are all pretty much low.. its just finding someone who knows what they are doing!!

  • #42425

    Ellen Schnakenberg
    Participant

    Gypsy – let us know how you’re doing….

  • #42428

    gypsy
    Participant

    CMKELLY… thanks for telling your story.. my vit. d is low also.. i think 29..so higher than yours..do you take 50,000 a week total? I”m only taking close to 2000 iu. I’m thinking about uping mine though. Thank you!

  • #42429

    rachmelrose
    Participant

    Thanks Ellen. I’ve been doing some more research over the last few days and I think I am suffering from chronic migraines. There is definitely something associated with my period that seems to trigger an increase in attacks, but I think what has happened this month is that I’ve over-used my medication to the point I am now suffering from constant/daily rebound migraines. I have used my triptan well beyond the amount needed to trigger rebound headaches. Now I have the fun task of trying to go without my medication over the next few days – the thought really scares me. I am travelling to Russia for work (from New Zealand) in two weeks time and I really need to get a handle on these migraines before then. I haven’t had any diagnostic testing done other than a CT scan. I live in New Zealand, and cannot see a specialist without a referral from my GP. My GP is fantastic, but so far has just trialled various preventative / contraception pill combinations, none with any real success. Think I need to go back to see her and request to see a diagnostic specialist….I haven’t got much patience left.

  • #42430

    Laura
    Participant

    My migraines and chronic daily headache began with peri-menopause. It has been 7 years now and I still have headache daily and migraine attacks at least once a week (I’ve seen many doctors and have tried many meds – I’m hoping a new doctor I’m scheduled to see in July will help me achieve some sort of relief). But let’s say hypothetically there is nothing that can be done for me medically – what are the chances that this will end on its own? I’ve looked on the Internet for information on whether or not this will continue indefinitely but I have not found anything. Does anyone here know if statistically this is likely to stop or will this continue as long as I live? I can’t hope for it to end with menopause since I am way post-menopausal now.

  • #42431

    Ellen Schnakenberg
    Participant

    Laura – I wish I could help you with that. I will look and see if I can find any statistics, but honestly, they may not even apply to you. The thing about Migraine that is so frustrating is that it just doesn’t follow any rules. Most elderly people do not still suffer Migraine, but some do. We know Migraine tends to be a progressive disease – this means it typically gets worse with time. Doctors also have suspected that as we age and our blood vessels become less elastic that this influences our frequency and severity of the vascular portion of the attack – should you experience this. This may go back to the old vascular theory though, which was disproven some time ago. We now know that Migraine can occur with no vascular dilation.

    So you see, there are no easy answers to your question I fear.

    Thankfully, for years after we go through menopause, our estrogen receptors begin to downregulate and this can influence our Migraines. In my case I started out desperately needing more estrogen, and ended up with HRT triggering Migraine attacks because I had downregulated.

    We are all different however.

  • #42432

    gypsy
    Participant

    Trying to figure out how to regulate my fluctuating hormones…I have chronic migraines.. I have tried HRT with no luck. What would be the best options for trying to stop the hormone flucuation so much and also what have people tried for preventives that worked for these types of migraines? Thought about low dose birth control?

  • #42433

    Ellen Schnakenberg
    Participant

    Gypsy, I suggest you take a few minutes and read through the entire thread here, as I go into a lot of detail re: your questions 🙂

  • #42434

    Justanothermigraine
    Participant

    hi, I’m 39 and have had terrible migraines starting after my first pregnancy when I was 33. No migraines during my pregnancies but bad ones after and ever sense. I had my second child at 37. After my second pregnancy I had blood taken for hormones and was diagnosed with a major hormone imbalance – no progesterone and not enough estrogen and a marker for high blood sugar. Also mild hypothyroid. I’m on Armour, Zoloft (for pain prevention) and I take ibuprofen or naproxen daily for chronic migraines. I get terrible menstrual related migraines so my gyn put me on the nuvaring. One ring was not enough hormones so he said to use two at once and replace every three weeks to avoid a period. Because that cost me $175 every three weeks, I waited an extra week one time a month ago so I could get free samples at my next appt. Big mistake. I’ve been bleeding ever sense with the worst menstrual migraine(s) ever. So my gyn wants to do an ablation. Sure what’s another $2k just to try it? I recently spent about that on essure (tubal ligation) in prep for the ablation and then chickened out on burning the walls of my uterus. Just not sure it will help me because nothing has. I need more convincing. Does ablation really help menstrual migraine? The only thing that has helped me with chronic headaches is vicodin. Still trying to find something else. Just tried Fiorinal. Made my migraines worse and caused vomiting. Tried pot. Worked but I can;t function daily on that. It doesn;t last long enough and it’s just too obvious to others that I must be high. Btw, I do not want to be high. I wish i could scream this on the rooftops to every doctor on the planet – most of us migraineurs don’t want to be high!!! We just want a life worth living. To be able to help our kids with homework and not loose it when they whine or have tantrums over normal kid things. I want my kids to feel free to run around the kitchen island giggling and screeching as they try to catch each other. I don;t want to be the mom always saying “Mama has a headache please be quiet” over and over. I’ve had so many well meaning friends and relatives get mad at me and say “they are just being kids”. I want them to just be kids. I want to just be their mama. Not a patient. I want my life back. I don’t have that yet. Still got some fight left though. I try to laugh. My mom drove me to the hospital for one of many procedures recently and I said “wherever you see a sign that says, ‘patient’ that’s where we go – that is what I am, a ‘patient'”.

  • #42435

    Ellen Schnakenberg
    Participant

    justanothermigraine – Lots of things I see here, so let’s start at the beginning…

    I don’t know when you had your hormones tested, but progesterone is the hormone responsible for maintaining pregnancy. If you have no or insufficient progesterone, you will miscarry early in the pregnancy. Progesterone and other reproductive hormones fluctuate throughout the month and after childbirth, so having a doctor who is aware of those fluctuations and willing to explain them to you is really vital. Having a Migraine and headache specialist on board is really key for you I think.

    Your thyroid is often *upset* after childbirth and can fluctuate hugely. Thyroid problems are a potent trigger for and cause of chronification of Migraine. Armour is a good product with an excellent track record for safety etc. it is made from dessicated pig thyroid that has been dried and ground, but it is not good for all people. The ratio of T4 to T3 (both thyroid hormones) in a pig is not the same as in humans. This imbalance can cause problems for Migraineurs with sensitive brains. It is great if the patient doesn’t convert T4 to T3 very effectively, but if you do convert sufficiently, then you are getting an overabundance of T3 which may act as a trigger. You can read more about this here: https://migraine.com/blog/migraine-triggers-and-co-morbidities-thyroid-disease-part-1/

    As you probably know, blood sugar fluctuations and problems can also be a potent trigger. However, depending on when your blood was drawn, this could actually be resulting from the low thyroid condition. Having sufficient thryoid levels helps a number of problems one wouldn’t normally associate with it such as cholesterol levels and yes, blood sugar levels and insulin resistance.

    An ablation is not likely to help your Migraines, but it *may* help the bleeding. However, there are other things that can help the situation as well. Some doctors (usually male) get a wild hair and insist that ablation or hysterectomy will cure all kinds of things, unfortunately this includes Migraine, which they don’t have the training to understand.

    Here is an example: A friend with severe autoimmune anemia was told repeatedly by her doctor that an ablation would *cure* her, but she was smarter than he was. She stuck to her guns, found a rheumatologist who finally began to treat her autoimmune condition and, well, you should have seen the old doc’s face when she came in with normal RBC’s for the first time in years! He was speechless. She had begged him to help her and he refused (with a smile on his face, and meaning every good intention) calling it a *woman’s issue* and not related to her illness.

    I don’t know what your personal situation is. Maybe you are one of the few who actually need this procedure. You have to decide that with your doctor. I always suggest patients get a second or third or even fourth opinion before any surgical intervention, especially if their doctor is claiming it is going to *fix* their Migraines. What if it makes them worse? If there were a fix for our Migraines, we’d all be doing it.

    Like you, I tried Nuvaring, but had no success Migraine-wise. This is a combination therapy. It is possible to use progesterone and creams available over the counter to help with low progesterone levels, as well as prescription progesterone birth control etc that can, for some patients, help their Migraines – – if they are low progesterone triggered. The trouble with progesterone is that it tends to be inflammatory and can actually trigger Migraine for some patients. I personally used a cream that did some really wonderful things for me, but was a terrible trigger, so I had to stop using it. Mine were estrogen triggered, so the added estrogen was, for me, important despite my estrogen dominance (low progesterone). Estrogen can be added by itself, or it can be given in combination with progesterone. However, it is often the balance between the two that is key, and if you are inadvertently oversupplementing estrogen in comparison to the progesterone, this might be something worth looking into.

    Nuvaring is a convenient method and delivery is consistent which can be really helpful for Migraineurs whose attacks are triggered by fluctuations… if you need the hormones they supply. Patches are also another very consistent delivery method, as are implants. Also, not all *hormones* are created equal. Some docs swear that bioidenticals are best, while others swear that there is no difference between them and lab created hormones. The fact is, our bodies do not always tolerate the things that are added to these hormones to make them patentable, and trying different ones for a period of time is sometimes helpful. Our brains are extra sensitive to changes in our bodies, so keeping things very stabilized is usually the key.

    As to the bleeding issue: It is inconvenient, and a real pain to say the least, but usually not dangerous by itself. Anemia that can sometimes result is a potential Migraine trigger to watch out for. Your doctor should tell you if he is worried and why, and a second or third opinion is useful here too. I had something similar happen and I bled for nearly a year. In the end, my own problem had to do with my body needing to stabilize after the fluctuations caused by the hormones I was being given. This takes time. Yes, it can sometimes be manipulated, but most doctors will tell you that, if you stick it out long enough it will go away.

    As to the increased Migraines, when you change your hormones — this is what really happened when you went off the ring for a while — it likely caused your hormones to fluctuate. Because you are getting to the age of perimenopause, it is possible that your body just couldn’t deal with the fluctuation and can’t normalize itself again as a result. This is one reason we encourage patients to find something that works then stick with it, as re-starting it sometimes results in the medicine no longer doing what it did before. This is true with Migraine preventives as well.

    The treatment meds you have mentioned here are all contraindicated as first line drugs for Migraine. This tells me a couple of things: 1. You may actually be suffering medication overuse headache instead of or in addition to your Migraines. https://migraine.com/blog/help-how-can-i-not-overuse-migraine-medications/ 2. You are not seeing someone who is treating your Migraines, but just one symptom – the pain. Here is a post with lists of board certified Migraine and headache specialists that I would like to encourage you to look at and consider trying. https://migraine.com/blog/looking-for-a-migraine-specialist/

  • #42436

    Justanothermigraine
    Participant

    Ellen – I do believe I am suffering from rebound headaches caused by my pain relieving medicines. And I am not seeing the right doctor yet.

    I need intervention to help got off pain meds not for psychological addiction but because without them I’m in so much physical pain. I’ve been off them before and the pain is unbearable. The preventatives never worked.

    As for the doctors, I’ve seen many and none have worked. But I will keep trying. I’m making an appt at the Cleveland Clinic soon and I might have to do their day clinic program for three weeks. Not sure where the money or time will come from but I’m getting to the point I have no choice.
    I went to MHNI (the Michigan Head Pain & Neurologocial Institute for two years before my last pregnancy (2 years ago). They scheduled me to stay at their clinic for two weeks but I couldn’t go the day I was scheduled to because that same day, I found out I was pregnant. Now, two years later I’m in the same boat – looking into an intensive clinic. No one has ever helped me successfully (no one at MHNI even – I was a ‘tough case’)with preventatives so I end up trying to relieve my pain any way I can in order to be there for my kids, husband and part-time job. Without pain relief I can not make doctor appointments, school functions, keep my job, be there for my husband, clean the house, take care of the kids or even exercise. I simply do not understand how to live with migraines without pain relief. So, I feel hopeless. Acupuncture, massage, herbal supplements, babysitters, naps, good food – it all costs a ton of money. I don’t have the money, literally. We are just over the low-income line.

    I’m sure I should get my hormone levels checked again but that too was very expensive. After learning I had blood sugar problems, I switched up my diet (less sugar and simple carbs), took Adipex-D and lost 23 pounds. But then I got terrible muscle cramps and found out I was hypothyroid and started on levothyroxine. Then my blood pressure skyrocketed. I was a 115/70 kind of girl but mine was 158-160/100 on more thsn 5 occassions over the past couple months. So I stopped Adipex – no change. Stopped Advil – no change. And then I decided to switch from Levo to Armour. Hoping that helps. Just made that change a week ago. Not sure yet.I’ve had so many headaches and I’m on advil again that i don’t even know if I could have normal blood pressure. Over the years at MHNI, they diagnosed me with menstrual related migraine, transformed migraine, myofascial migraine and chronic daily migraine – 4 different types of migraines! But ALL went away when I was pregnant. I want to bottle up the pregnancy hormones and take them. MHNI had me on Topamax, zoloft,several triptans, baclofen (liked this for muscle knots and tension), verapamil, beta-blockers, many birth control pills. I know I tried at least 10 other drugs that I can’t remember right now. I’ve tried progesterone cream in the past with no luck. I did need progestore suppositories in order to hold onto my last pregnancy in the first trimester. Then I had terrible cholestasis in the last trimester and had to deliver early – perfect baby girl.I feel like a guinea pig and since I’m in worse pain now, it’s really hard to shell out more money but if I’m going to live with migraines, I need to try to improve my situation even if just a little. But I’m telling you – I can’t live with the pain everyday. Not this pain. My head is going to explode it hurts so bad. Oh, I also have a pituitary tumor but it’s tiny and not growing over the past 4 years since they discovered it. I pay every year for the MRI. I do have a sensitive system – if there are jellyfish eggs in the ocean, I’m the one who breaks out in a rash. If there are no-see-ums by the lake or some kind of flea in the sand – I get bitten and no one else does. All mosquitoes seek me out. I’ll probably get west nile or malaria someday. Even hot water or hot weather gives me hives. But the allergist said I have no allergies – go figure! I know I’m allergic to hormones – how’s that? And, if I breathe wrong, I get a migraine. Maybe I’m allergic to living.

    My tsh level was 3.01 when I was diagnosed hypothyroid so most doctors don’t even think I have a problem but I know I do. The complicated way in which the thyroid works baffles me. Are there migraine specialists who truly know the thyroid? Also, when I went to MHNI they said hormone headaches were the hardest to treat and I would need a gyn to get birth control (which I did) – why would they not work with a hormone specialist? They sent me to an endocrinologist who said I was fine with a tsh level of 3.0. Even one of the best places for migraines on earth couldn’t really help me and didn’t have the right team of doctors for the hardest to treat migraines. But I will try and try again. Because otherwise, I truly do have no hope left.

    I’m not doing the ablation because I know the bleeding is from messing with the nuvaring. I don’t have a bleeding problem – I have a hormone problem so the ablation will not work.I know this in my heart.

    I want to trust doctors again. Right now, I don’t. But they hold the prescription pads for whatever it is I need. So I keep going back.

  • #42437

    Ellen Schnakenberg
    Participant

    justanothermigraine – I have a few answers for you, so let’s start at the beginning:

    There is a real difference between medicine addiction (taking it for a high and can’t stop) and dependence (taking it to treat pain and without it the pain is intolerable). Please remember these differences, as they are key to good treatment and management for patients.

    That said, unlike most chronic pain conditions, Migraine has a physiological reason it is causing pain, and when that physiology is treated appropriately, the pain goes away. Treating the pain is not the best thing for Migraine patients… treating the Migraine process eliminates the pain they seek relief from. It sounds like you are aware of this, but are having trouble finding a way to physiologically deal with the Migraine attacks and are therefore resorting to pain control. This can lead to the chronification of Migraine, which you want to avoid at all possible costs. It sounds like you may already be chronic however. Have you discussed this with your doctor?

    You say that preventives never worked for you. It actually would take a lifetime to try all 100+ preventives and combinations of those 100+ preventives the way they need (usually 3 months after titrating up to optimal dosages) to be tried to rule them out as effective. I’m not saying that you’ve missed any meds, but I’d like to give you a link that might help you decide if you’ve really tried everything you should before giving up on them:

    Migraine Management Essential 4: Preventive Treatment https://migraine.com/blog/migraine-management-essential-4-preventive-treatment/

    Fortunately, many of them are not expensive. Treating an attack with an abortive that is specific to Migraine is important too, and our offer center here may be helpful for paying for some of them: https://migraine.com/offer-center/

    I understand not having the money for treatment. I’m there myself and riding a very fine line management wise. That said, this is our lives we’re talking about. I have resisted selling our home these past years, but if it would help me get my life back, we have agreed that is the next step for us. We had to ask ourselves, how much is my life worth? The answer was clear.

    Getting hormone levels checked may not be as expensive as you think. Did you know you can order your own labs without the need for a doctor’s appointment etc? Insurance won’t cover this type of testing, but in some cases where patients can’t afford labs thru their doctor’s offices or have reluctant docs who don’t want to order the testing and patients find themselves on their own… this can be very helpful. There are many different places you can order these from. The testing is done in the same labs you’re used to from your doctor’s office, but don’t require the doctor. They are often reviewed by doctors before you get your results and you can ask for further information from them after you get your results.

    As to your 4 different diagnosis – they aren’t ICHD-II diagnoses, but terms the doctors may be using to try to explain to you the triggers for your Migraines and what you are experiencing. Understanding that is key for you so you don’t get overwhelmed. Ok? Hang in there. It’s very common for us to have multiple headache disorders and yes, multiple types of Migraine. The key is remembering that all are different and need to be treated differently.

    Yes, you will have to live with Migraines, but that is because there is no known cure right now. There are no treatments that will eliminate them for you, me or anyone else. This is why we learn to manage them the best we are able. I truly wish I could tell you they could be cured, but the fact is, it is our jobs to learn to live with them and treat them the best we are able. As science progresses, hopefully we will get better and better at that, and someday, maybe even find a way to prevent them altogether.

    Your pituitary tumor is KEY to what is happening with you! Are you seeing an endocrinologist? I can’t stress enough the importance of getting this taken care of. The fact it hasn’t grown doesn’t mean it isn’t influencing your hormones and making your Migraines MUCH worse.

    As to hives – these can occur as a result of a sensitivity to something. It doesn’t mean you have an allergy. That said, if you see a pattern that suggests allergy, please get to another allergist for a second or third or fourth opinion. Allergies and allergic reactions can also act as Migraine triggers, so getting this straightened out is also going to be important for you.

    You won’t be allergic to your own hormones, however people are sometimes allergic to the additives to them that make them patentable by drug companies. You can have sensitivities to almost anything, however an allergic reaction is a very specific immune response that is measurable. If they’re not seeing it, then something else is going on. Finding that and fixing it and any other health issues is really important.

    Your TSH level is not super high, but for many of us, that is a sign of insufficient hormones. Hopefully your change to a more T3 rich supplement has helped you by now, but if it is making things worse re: your BP etc, then other adjustments really need to be made. A good endocrinologist who SPECIALIZES in thyroid conditions (not diabetes or other hormone issues, thyroid is what you need) will be the most help here.

    I should also add that mosquitoes etc seek out carbon dioxide. Have you had a sleep study to see how you are oxygenating during sleep? This can be a potent Migraine trigger for many…

  • #42438

    Amy Caraballo
    Participant

    Hi! Peri-menopausal in status migrainosus and miserable. I’m on day 20 of this one which really has been longer but with a few days break in between. The 20 days has been steady, however. I’m a walking zombie on Imitrex. My OB/GYN has me on a 3 month hormone treatment to keep my estrogen from dropping and now I just started Topomax. Last night was my first dose of 50mgs after having only 25 for a week. It was nasty. I was an insomniac all night. So tonight I am trying 25 again and breaking it into 2 doses (morning and night). My doctor told me I could try it either way. Any advice? I’m hopeful the Topomax is my missing link.

  • #42439

    Ellen Schnakenberg
    Participant

    Amy Caraballo – Please read this forum for lots of detailed information on your question about topiramate: https://migraine.com/groups/users/forum/topic/topamax/

    I am concerned about your use of Imitrex though – are you using it every day at this point?

    Are you seeing a board certified Migraine and headache specialist? If not, why not check out this link of listings of specialists in the US: https://migraine.com/blog/looking-for-a-migraine-specialist/

  • #42440

    hazedpf
    Participant

    I am 44 and have hormonal migraines that appear to run in my family. I am also peri-menopausal. My periods are very heavy and I cannot sleep through the night without having to wake up 2 times to change a super tampon and a pad. My OB initially put me on Low Estra 24 which worked well, but my insurance does not cover it and it costs $70 a month and with the economy I cannot afford it. Our next plan was the Mirena. I had this inserted and this helped with the period and then I went to see a neuro. He put me on Topamax and Amitriptyline. This worked well for about a year and a half until I had complications with the Mirena. The Mirena fell and had to be removed. It has been 5 months since that was removed and the headaches are back with a vengeance. The Topamax and the Amitrypityline are not working. I am on day 6 of a lingering headache post-period. I have an appointment with the OB and I am sure she is going to want to do a hysterectomy, because she discussed that in the past. I know this could increase the migraines and I am starting to feel lost and scared because I fear the Migraines more than anything.

  • #42441

    Ellen Schnakenberg
    Participant

    hazedpf – Are you seeing a headache and Migraine specialist? Perimenopause can be scary, but if you’ve read the rest of this thread, you know that you have choices. Hysterectomy is rarely going to fix the problem as you realize. How are your thyroid hormones? These can often be dysfunctional and lead to prolonged periods and other hormonal aberrations, as well as helping lead to the chronification of Migraine. Just some thoughts…

  • #42442

    garfieldrules
    Participant

    Hi I am new to this forum. I am 44yrs and live in Gold Coast, Queensland, Australia. I have suffered chronic daily migraines for 6yrs and chronic daily headaches for the last 26yrs or so. I get severe hormonal migraines. I am on the pill so only have my period every 3 months but still get the horrible monster migraine each month on top of my usual 24/7 daily migraine. We don’t have alot here in Australia as far as help. I have had MRI all clear and tried alternative therapies and been to 2 neurologist with no help for my pain. Seeing a pain specialist now but has not really helped. He has had me on Lyrica & Cymbalta. Next month I am having injections in back of my neck and head to try and relax muscles.

  • #42443

    Ellen Schnakenberg
    Participant

    garfieldrules – Do your Migraines come at a predictable cycle/time? Sometimes Frova can be used for a few days in anticipation of a problem. It doesn’t help all patients, but it might be worth at least discussing with your doctor.

    Good luck, and hang in there. I know this is hard, but there are a lot of options out there and always hope <3

  • #42444

    garfieldrules
    Participant

    Thanks Ellen. xx

  • #42445

    aviatorjj
    Participant

    I was over on about.com and migraine central and just found you guys over here. yay!

    I’m 40 and have had migraines since I was little. After trying a zillion different preventative combos my gyn put me on Seasonique to try and cut back on my periods to only 4 times a year, hence hopefully getting rid of my period related migraines.

    I’m on week 7. The first 4 weeks were like magic! I went from 2-3 migraines #8 a week to 2-3 minor #2 HA in a month. Amazing.

    Now, I’m bleeding all the time (sorry TMI), I have cramps, depression, gained weight, my boobs hurt so bad and I can’t sleep at night. The migraines are a little worse but nothing like before. I told my doc and he said to give it another month. Ugh! This is awful. The severity and frequency of the migraines are better but I feel like I’m PMS’ing all the time. And I have not slept through the whole night in weeks, I’m going crazy. Even with Lunesta I can’t sleep.

    Has anyone else tried Seasonique? What is going on with the sleepless nights? Will it get better? This is quite a trade off for my migraines being better.

  • #42446

    Teri Robert
    Participant

    Hi, JJ!

    Glad you found us. We left About.com a long time ago, and most of the info there is now old.

    I haven’t tried Seasonique, so I can’t offer you any personal experience. Side effects can stop, but I’d think they would have stopped by now if they were going to.

    Will you please keep us posted? It’s good to see you again,

    Teri

  • #44537

    Becky
    Participant

    I was the first person Southern Health insurance approved a hysterectomy for menstrual migraines. But the thing is it is ONLY for menstrual migraines. I even had a nurse say last week “I thought the surgery was going to cure your migraines” Ahhh, that would be a NO! There is no cure, only treatments.

  • #44546

    Ellen Schnakenberg
    Participant

    Rebeccapa – It’s unfortunate that a hysterectomy won’t help most people. The numbers actually are against us. Here are a couple of articles that you might be interested in perusing:

    Bloodletting, leeches and hysterectomy: https://migraine.com/blog/bloodletting-leeches-and-hysterectomy/

    Hysterectomy and Migraines: https://migraine.com/blog/hysterectomy-and-migraines/

  • #46017

    SEVEM
    Participant

    Hey, half a year a go I stopped taking birthcontroll pills (Meliane). I never got my period again (not pregnant!) and, at the same time, the migraine got much worse. My neurologist subscribed Topamax. According to her, it is not usefull to look deeper into what is causing these attacks. I think the hormonal issues are a big trigger, but she claims I would have these massive attacks anayway. I do have some other triggers (most of them are food related:MSG, chocolate, cafeïne), and I suffer from migraine since I was 12. But it was never this bad as the last half year. So I really think that the hormones are making it much worse. A blood test was taken and it shows I have to much prolactin, which causes a disbalance in all the other hormones. Can this cause migraine?

  • #46051

    Ellen Schnakenberg
    Participant

    SEVEM,

    Oh dear. I cringe when I hear patients say things like this. Let’s look at a couple of the things you’ve mentioned here:

    Managing ALL your health issues are paramount if you are ever going to have hope of getting control of your Migraines. Migraine brains don’t like change. They don’t like inconsistency, and when you have other health issues, especially hormonal issues, this is a recipe for big, big problems. PLEASE seek help for your hormonal problems as well as your Migraines. I highly recommend you seek the immediate help of an endocrinologist as well as a Migraine and Headache specialist. Neurologists are not Migraine specialists and in fact have little training in diagnosing, treating and managing Migraine. Here are some helpful links for you:

    How Are Migraine Specialists Different? https://migraine.com/blog/how-are-migraine-specialists-different/

    Looking For A Migraine Specialist? https://migraine.com/blog/looking-for-a-migraine-specialist/

    Prolactin accompanied by your lack of menstruation can be symptoms of something much bigger that needs to be addressed. Yes, it can very definitely trigger Migraines too. This could be a serious issue which could potentially even include a small tumor that can cause these hormonal issues. It takes a very good doctor and some very specific tests and images along with a doctor who knows how to order the correct images and look at them properly, to be able to tell what is going on here, but it is an abnormality, and all abnormalities need to be addressed when you have a problem Migraine situation like this. Increased prolactin levels can be the result of a number of issues including thyroid conditions, but until a tumor is ruled out, I would be looking for a doctor who is not satisfied with ignoring such a significant finding. All hormone imbalances can potentially trigger Migraine. ALL.

    Please write back and let us know what you decide and the outcome, okay? I see MUCH hope for you here. There are obviously things that can be changed which may be helpful for you. This is a wonderful thing…

    ~Ellen

  • #46226

    pepper
    Participant

    I’ve had migraines since my teen years around the time of my period. When I got married I went on birth control pills. I then had the migraines every month, the 4th day of my period for 2-3 days. They were quite severe. I enlisted the help of my doctor who referred me to a neurologist who ran some tests and decided that I was just a “type A” personality and that’s what was causing my headaches. I also went to a hypnotist. I was able to hypnotized but it didn’t make the headache go away. During both my pregnancies I was headache free. The whole 9 months! It was such a blessing. I hoped, of course, that they wouldn’t come back but they did and now my daughters both have ‘menstrual migraines’. I worked for a doctor who prescribed ergotamine tartrate. It was taken each day for 5 days prior to the period and every day throughout. What a wonderful drug! NO MIGRAINES. But then after a few years it was taken off the market. Cafergot was still available but I had side effects from that so I didn’t use it. Many years later my headaches occurred less frequently and finally went away. Due, I thought to the cessation of my periods. I was also being treated for hypertension in those years and last year my doctor took my off one of my meds., a calcium channel blocker because my BP had become consistently low. Guess what? The migraines came back. Now after a couple headache free months I’m getting them again. I will ask to go back on the higher dose that I was on for so many years. I hope that takes care of the migraine.

  • #46228

    pepper
    Participant

    I’m new to Migraine.com. I’ve had migraines since I started having periods in my teens, somewhat haphazardly at first and later when I went on birth control pills, the 4th day of every period, every month for 2-3 days. In the 70’s I worked for a doctor who prescribed ergotamine tartrate daily for 5 days before my period and throughout it. It was a miracle to me! No migraines. After several years this drug was discontinued. Cafergot was till available but I had side effects with it so I didn’t use it. I was gradually started on blood pressure meds due to hypertension and eventually when I was in my 60s the headaches tapered off and were finally gone! Until last year when my blood pressure had started going down and my doctor took me off one of my BP meds. The calcium channel blocker. Within a month my headaches started coming back. I had assumed they had stopped because I was no longer having periods so it took awhile for me to realize they may have stopped because of that BP drug. My doctor started me back on it and cut back on another. For a couple of months I was again headache free but recently they have started again, about 4 weeks apart. I plan to ask to go back on the higher dose of calcium channel blocker to try to rid myself of the headaches. I hope to be able to cut out one of the other BP meds if I increase the dose. My 2 daughters also have menstrual migraines.

  • #46468

    Rhonda H.
    Participant

    I definitely have had changes due to hormones all throughout my life. I’ve got familial hemiplegic migraines. When I was 10 my vision would go wonky. At 16 I started getting blackouts and head pain. At 25 or so (along with adult acne, unfortunately) I got vertigo and dizzy spells, among other things. At 35 full hemiplegic attacks were added on (but at least the acne is gone).

    To be honest I’m rather dreading pre, onset, and post Menopause. How much more will hormones add on?

  • #46479

    pepper
    Participant

    saifai, you might be surprised that things calm down once you are on hormone therapy. I was also worried about going on them fearing an increase either in severity or frequency but it seemed to even me out by avoiding the fluctuations in my own hormone levels. Hopefully that will happen for you as well.

  • #46530

    Hi pj15@centurytel.net,

    Welcome to the Migraine.com discussion forum, we are so glad you’ve found us!

    Thank you for sharing your story with us. Many women experience fewer migraine attacks during pregnancy due to hormonal fluctuations, just a many other women get more migraines during pregnancy. Migraine is so different for each of us it’s hard to tell who will have increased migraine attacks during pregnancy and who won’t.

    “Type A” personality? I hope you’ve found a new doctor! We now know that migraine is a genetic neurological disease, not an issue with our ‘personalities.’ Let me share a bit of information on current migraine management that may be helpful;https://migraine.com/blog/migraine-management-essentials/.

    Keep us posted on how you are doing, OK?

    Nancy

  • #46531

    Hi saifai,

    Maybe luck with be on your side this time and you will breeze through menopause!!

    Fingers crossed for you.

    Nancy

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