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Newbie, any thoughts GREATLY appreciatd

  • By solove0611

    First of all thanks for reading, this is the first forum I have ever joined and I have been on here over an hour already reading different stories. The love, compassion and support that I’ve seen on here is amazing.

    Sorry this is so long, and maybe I am in the wrong category, but I am still learning.

    Ok here is some background. I am a 30 year old female, had a hysterectomy 2 years ago, suffer with severe depressive disorder, OCD, and generalized anxiety disorder. I’ve had 6 suicide attempts since age 16.
    HOWEVER, the current medication regimen I am on has kept me “stable” and symptom free for almost two years which is an amazing feat in itself. I found a psychiatrist who is amazing and have been in tons of counseling-I tell you all of this so you can get a mental picture of where I am, and know that the mental issues I have have all been addressed and are in control.

    Ok enough background, onto my current issues.
    About a year ago I got the first migraine I have had since I was in my very early 20’s. I had 8-10 nerve blocks and went to four neurologists, none of which were willing to help me explore my options. Basically they didn’t know what to do therefore I “couldn’t be helped”. I have been on Neurontin, Topamax, and many other maintenance drugs with a whole other army of rescue drugs. I finally quit taking Neurontin and Topamax because I was having MAJOR cognitive side effects, I was losing words, and everyone around me knew something was major wrong. I would know what I was trying to say but couldn’t find the words.

    Now finally my question-how many major headache days are “acceptable”? My migraine is always there, but stays at around a 4 on normal days and that is something I can learn to live with, however I am having approximately 2 episodes a week that last between 2 and 10 days. I realize the length of mine is not a typical migraine, however that’s where I am at right now, and was just curious what other’s thoughts were regarding am acceptable number. At this point if I could get to having one headache per week I would be more than ecstatic!!

    Thanks for any and all thoughts/advice!!

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  • By Tammy Rome

    Welcome to our forums and thanks for the great introduction. You’ve come to a great place to get support and learn more about migraine.

    Let me start by stating that daily pain, no matter how mild, is not acceptable. Your doctors did you a disservice by giving up just because your case is complicated. Shame on them! In order to get the best treatment (and the best results) you need to see a true headache specialist. Not all neurologists are headache specialists, even if they have a lot of headache patients. Some headache specialists are actually primary care doctors, psychiatrists, ENTs, or pain management specialists. The difference is that they have been specially trained in the diagnosis and treatment of all headache disorders, not just migraine. This is important because many patients (like me) have more than one headache disorder. That can make the successful treatment of migraine a lot more complicated. Also, these specialists know what comorbid conditions to look for that can make migraines more difficult to treat.

    For example, I have sleep apnea and I didn’t know it until just a few years ago. Once I started using a CPAP at night, I stopped getting most morning headaches. I still get migraines and cluster headaches, but I rarely wake up with head pain anymore. Treating the sleep apnea helped me with headaches.

    Depresssion and anxiety often occur in patients with migraine. The neurotransmitters responsible for affecting our mood also affect our pain perception and contribute to the brain disruptions that start the migraine process. It is great that you are already being treated successfully.

    Here are a few links related to what I’ve written that will help you understand better:

    https://migraine.com/page/2/?s=headache+specialists&submit=Go
    https://migraine.com/blog/what-is-a-comorbid-condition-a-bulleted-list-for-patients/
    https://migraine.com/living-with-migraine/migraine-and-sleep-disorders/
    https://migraine.com/pro/pathophysiology-of-migraine/

    Please try to find a better doctor and refuse to accept the answer, “you’ll just have to live with it.” That’s a cop-out and we all deserve so much better.

    Tammy

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  • By solove0611

    Hi Tammy, thanks so much for your response to my post. I didn’t make myself very clear when talking about which doctor I am currently seeing, I am now a patient of the diamond headache clinic in Chicago, IL, and they have been wonderful. I guess my main question is what is acceptable in others opinions regarding headache days per month. I completely understand that they are not “curable” only “manageable”. I started on Keppra about 3 days ago, and while this medicine is the only one so far that has given me any hope at all, the side effects are still pretty major-heart palpitations, very tired and some confusion, however I am hopeful with time my body will adjust

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  • By Tammy Rome

    Sorry for the delay in my response. I’ve been having a bad round of migraines and clusters for most of October that have kept me offline more than I’d like. In the blur, I misplaced the location of your post and just found it again. I’m doing better now.

    I think the level of “acceptable” is different for every person. The experts say that any more than 2 per week and you need a preventive. We also know that treatment “success” is when a preventive can cut the frequency at least in half. That’s a pretty wide range for someone with chronic migraine. If you are getting 15 or more days of headache, then 50% still means you get 2 attacks each week. That may be great if they are mild and can be stopped quickly with abortive meds so you don’t lose the entire day. But if you are down for the entire day twice a week, migraines are still interfering with your life quite a bit.

    For me, a successful treatment would be one that keeps the attack frequency down to fewer than once a week and quickly aborted with medication. I get those weeks every now and then and really enjoy them. To see that happen on a consistent basis would be amazing. So that’s what I’m shooting for. I will keep pushing my doctors until I get to that level or better as “baseline” because that’s a level that would allow me to function best and make solid plans.

    Hope that helps.

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  • By solove0611

    Hi, Tammy hope you’re doing well, and thank you for responding again, can’t tell you how much it means to me. I agree with you that everyone’s “normal/acceptable” is different. Since my last response my medicine have been changed again and I am off Relpax as it had some really bad side effects for me. I am still trying to find one that works well, as for abortives the Migranol nasal spray and baclofen work better than anything else, therefore those are what I stick with. I am currently still having 3-4 days a week that I am completely down (vomiting, aura, dizzy, ECT), and my headache never goes away but it does lessen to where I can function. Still learning my new normal and get frustrated as does everyone, but I’m working on it 🙂 have a great day/weekend and thanks again for replying to me.

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  • By Tammy Rome

    How is the Keppra working for you? It does have some rare nasty side effects of causing extreme paranoia. If that starts, please let your doctor know right away. Most people don’t experience this, so don’t worry, just be aware. Remember it can take more than 3 months to know if a preventive will work.

    Stay strong. Hang in there!

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  • By solove0611

    Hi, Tammy! Thank so much for checking on me and sharing so much of your knowledge!! I hope you are doing well!! After taking the Keppra for a little over 2 weeks my doctor took me off of it. As I mentioned before I have a past with psychiatric issues and I had a suicidal “episode” after being ‘stable’ for two years. It did make me a little loopy, but I was functional. Here’s my next question, have you had or are you aware of anyone that has had an issue with Relpax? When I saw my doctor last he gave it to me as a rescue drug. The day I had my episode I took it for the first time. The episode lasted about 3 hours. The reason I am questioning the Relpax is I didn’t think the Keppra would be out of my system in the time frame that the suicidal thoughts subsided. I haven’t taken either medicine since, and will of course follow all directions doctor gives me I was just curious. Sorry so long, have a great day/night and thanks again for all your help!!

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  • By Tammy Rome

    I’m not aware of any psychiatric issues with Relpax or any other triptan. However, all triptans do cause vasoconstriction which can leave you with tight muscles, chest tightness, throat tightness, etc. I have see some people who are prone to anxiety have trouble staying calm when these side effects are present. In my opinion (not necessarily that of Migraine.com), these patients would be better served with Cognitive Behavior Therapy that helps them learn not to respond in fear in response to these side effects, but to view them positively as a sign that the medicine is working. Anyway, that’s what helped my son who has OCD.

    That being said, triptans are not appropriate for all patients. Cardiovascular disease, high blood pressure, etc. are good reasons not to take them. If you have questions about whether or not it is medically safe for you to take triptans like Relpax, please talk to your doctor.

    Take care!

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  • By solove0611

    Hi Tammy! I could not agree more with you about cognitive behavior therapy, that being said and from someone who has had quite a bit of the therapy, sometimes no matter how hard you try the anxiety can’t quite be controlled. Please do not misunderstand, I whole heartedly believe in it, it’s just that the feelings are sometimes incredibly overwhelming and medication must be taken before you can fully utilize the tools you’ve been taught, as your brain can’t always shake a full blown panic attack on its own. I personally am choosing not to risk the Relpax, and of course have stopped the Keppra. It’s kind of a chicken and egg thing-which came first and what caused what, I just know that you have talked to way more people than I have and was curious if you had ever heard of this issue with anyone else. I didn’t have the panic feelings at all with the Keppra, thank goodness, for me it was the suicidal thoughts that came pelting back, regardless of which medicine it was, I am just grateful it passed fairly quickly. I hope I didn’t offend you in any way with this post and please know how incredibly grateful I am that you have taken the time to offer your thoughts and views, this site and talking with you have been an absolute God send. I hate that everyone here has to suffer, but it’s so nice to read stories and talk to people who totally understand. I am blessed with a family and husband who are very amazing and do all they can but if you’ve never had these issues you just can’t truly get it.

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  • By Tammy Rome

    You’ll find that it is very difficult to offend me. 🙂 I completely agree about anxiety and medication. It sounds like you made a good choice regarding medication. I’m also very glad to hear that the suicidal thoughts passed quickly. It’s so good that your family is supportive. My husband has always been supportive. When he started getting migraines, it did change our relationship because now we have a common experience and common language. When I say I have a “hangover” he knows exactly what I’m talking about.

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  • By solove0611

    Glad I didn’t offend, you will find I am the same way, my husband has what I lovingly **insert eye roll here** call foot in mouth disease so no I don’t offend easily

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  • By solove0611

    Hi Tammy I can’t figure out how to send you a personal message so I’m hoping this gets to you, I am day four of one if not the worst migraine I’ve ever experienced and I was wondering if you had any experience with the ER? Any help appreciated!!

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  • By Tammy Rome

    Got your message! Every ER is different. My local one is very good. They have a great protocol set up by my own neuto. It works for me most of the time. I have meds at home now that keep me from needing the ER now. If I needed it, I would certainly go. 4 ddaysis way too long for a migraine and needs to be checked out and stopped. Go get help and let me know how it turns out. Feel better!

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  • By solove0611

    Hi, Tammy! Thanks for responding, let me say our ER is NOT a good one to go to for migraines. I was made to feel like I was a drug seeker, and also told it is not possible to have had a migraine that is a 10 on the pain scale for four days. They did give me pain meds, which knocked me out, I did sleep and I am feeling better today, so I suppose it turned out ok. Perhaps I am a bit overly sensitive about my past, but the ER doctor took a look at my current meds (psychiatric and other)and I felt he basically dismissed me on the spot. Don’t get me wrong, I understand I am on quite a few psyche meds, however, if he would have taken the time to speak to me for more than about five minutes I could have explained a bit more. I asked my husband both last night and today (since I am feeling better I knew he would be more honest :)) if he felt I was being overly sensitive and he said no and feels the same way I do. As silly as this sounds we have a rule in our marriage-don’t ask a question if you don’t want the answer, even if it might be harsh, we are honest, and the one asking can’t get mad at the answer. Doctor’s are supposed to listen and not judge people, or so I thought. Anyway, I was given morphine, Benadryl and a higher dose of the nausea medicine than I have at home. I think perhaps the doctor simply didn’t have a lot of knowledge regarding migraines, and he wasn’t willing to admit that. I was literally the only patient in the ER so I know he wasn’t brisk because he was overwhelmed with patients. I live in a small town, of about 7,800 people. That is a large reason I drive 5 hours one way to go to Chicago to the headache clinic. St. Louis is about an hour and a half from here and there are quite a few bigger cities I could have gone to, but I was in such dire need of help I went here in town-that mistake won’t be made again. He was unwilling to listen when I asked about DHE he said they had never and would never stock that in the pharmacy as it was ineffective. When I initially told him what was wrong his exact words were “what do you want me to do?” Ok I will stop my rant lol Thanks for checking in on me, and all of your help.

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