Chronic Migraineur with chronic vertigo

By dianems

2 min read

Hi all, I was first diagnosed with migraine in my early 20's. They came at end of menses monthly. At 20 I had a partial hysterectomy due to endometriosis. Mid 20's I had a continuous bout of severe migraine pain that lasted 6 weeks and sought my first neurologist. I was put on Amitriptyline at that time as a preventive and I started feeling better. I was pretty controlled for 14 yrs. until I had to have a complete hysterectomy at 38 yrs. of age. About a year after my hysterectomy I developed Epstein Barr Virus that turned into mononucleosis that made me pretty ill and then several months of yeast infections.

Since my 40th birthday I have been chronic with migraine and vertigo ever since. I am now 61 yrs. old. It has been totally devastating and changed my life totally. I used to work full time, danced, played sports, traveled with husband, etc. I have been on total disability for 20 yrs. now with not much improvement after seeing 14 neurologists, PT's, chiropractors, holistic practitioners, done colonics, Botox, have been on several different meds. had upper teeth pulled to remove mercury, had cervical spine surgery, massage therapy, acupuncture, you name it I've done it. I'm struggling still to this day. I drive only about a 5 mile radius. I've gained 40 pds. since I used to be rather thin and very active. It's extremely difficult for me. Thank GOD we don't have any children. I wouldn't have been able to take care of them. I'm in bed daily but get out as soon as I have any let up. I've tried several different diets with no benefit. I'm a very proactive person and do as much research as I possibly can on my condition. It's very difficult for me to read too much because of the vertigo. I wanted to say I've heard from doctors and have read that after having several viruses it can change your brain chemistry and I may have to live this way. Well that's not sitting too well with me. I'm still trying new avenues the best way I can.

I cannot give up hope even though this has been very draining on me. I realize I'm not terminal but it sure feels as if I'm dying at a very slow pace. Thanks for listening. I hope someone has similar symptoms that I may be able to get any information possible. I feel for all of us sufferers. People really don't understand unless they walk in your shoes. Thanks. Diane

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Joanna Bodner Community Admin
Hi there DianeMS, Thank you greatly for taking the time to share your journey with us. You have certainly been contending with a great deal for many years now! I am so very sorry to how much you have had to endure and continue to. You have a wonderful attitude with maintaining such a positive outlook, continuing to stay educated, not giving hope and your willingness to do whatever it takes to explore all therapy options. Great job! While you will likely receive feedback from the community, regarding their personal experiences, in the meantime, I thought I would share an article related to MAV (migraine associated vertigo) as I thought the comments (from members like yourself) at the conclusion of the article would be especially helpful for you to review: <a href='https://migraine.com/blog/migraine-comorbidites-migraine-associated-vertigo' target='_blank'>https://migraine.com/blog/migraine-comorbidites-migraine-associated-vertigo/</a> Thanks again for taking the time to share your personal story and always know that we are here to listen and support you. You are never alone! Thank you for being part of our community. Take care, Joanna (Migraine.com Team)
1. dianems Member
 Thanks so much Joanna for your response and information about migraine/vertigo. I've seen a lot of it before but it's always good to learn as much as possible. I appreciate you writing me. Diane
juliecalvey Member
Diane, I have also lived with MAV for about as long as you have. Preventatives got me out of bed, but not much more than that. I take Topamax, Pristiq and Klonopin to bring my vestibular system down. However, what really got me out into the world, although I still do suffer, is Enzacta's PXP. It does cost me a lot of money, but I also felt as if I was slowly dying as each week I was getting worse, so bad that I was in a state of chaos and though that I would, and really wanted to die, for lack of even being able to eat. My husband cheated on me because I was no good to him - he claimed I abandoned him. So, in my bad condition I had to pack up and move back home. I lost my business, which ran automatically and I now Life Coach, which barely gets me by. Good Luck to you Diana, i really get this absolutely crazy illness. Julie
1. dianems Member
 Julie, I'm so sorry your situation caused your husband to not be supportive at all to you and your illness. It's not our fault. My husband, fortunately, has stood by me but I'm no good to him either. It's very difficult but he's being understanding and see's that I'm very sick. I wish you the best and I'm sorry you lost so much. We do lose much of our normal lives with this and I totally don't understand why no one can figure this out! It's very frustrating. I've felt as you did many times before but I'm trying my best to keep on trucking but it's definitely a life that makes me feel as if I'm 90 yrs. old. I actually hate it. I do see two different therapist because of this. I've not heard of Enzacta's PXP I'll have to look into it. Thanks for your response. Take care and be gentle with yourself. Diane
Bill Bartlett Member
Dear Diane: Thanks so much for candidly sharing your story. While my symptoms are nowhere near as debilitating as yours, I have had some experience with changes in brain chemistry that has helped, directly and indirectly, my migraine symptoms. A psychologist I met wrote extensively about SPECT imaging of the brain. Both my wife and I have had SPECT scans reviewed by him. Mine points at one cause of my migraines, a brain injury from an automobile accident. He recommended some changes that have had some modest impact on my migraine symptoms but profound changes in other areas, which has influenced my migraines indirectly by reducing stress and anxiety and improving concentration. Your mileage may vary, but I believe that we can change our brain chemistry. Please let me know if you are interested in his book. I would be happy to share the information with you. More importantly, I take promethazine every night; that has eliminated my morning vertigo symptoms. Promethazine is an anti-nausea medication. World of difference for me... Bill
1. dianems Member
 Bill, thanks for your note. I've not heard of SPECT imaging before. Yes, if you could send me the name of that book I'd certainly look into it at the library or purchase it. I currently see a psychologist that works on mindful breathing techniques with me. Apparently, because I hold myself somewhat tensely because of being ill I tend to hyperventilate a lot and didn't even realize it. These exercises do help with slowing down and relaxing me more but I can't say it's helped me for hours on end. I may get an hour or two here and there. Take care. Thanks again.
2. Bill Bartlett Member
 It is $3 in the Kindle Edition: <a href='https://www.amazon.com/dp/B007V8RR0A/ref=dp-kindle-redirect?_encoding=UTF8&btkr=1' target='_blank' rel='noopener noreferrer ugc'>https://www.amazon.com/dp/B007V8RR0A/ref=dp-kindle-redirect?_encoding=UTF8&btkr=1</a> Please let me know if it speaks to you in any way. Best to you, Bill
vmkrause Member
Dear Diane, Thanks so much for sharing. Thank your husband, too, for sticking by you. I am 70 and have migraines since age 13. Did pretty well with Anacin until my late 30s. Then preventives were tried and some worked fairly well but none for more than a year. Acupuncture with an amazingly good doctor worked the best, but again for only for a year. Did have to take one Anacin with it. Preventives no longer work and I now have to use Fiorcet, morphine, and a compounded Dilaudid nasal spray. Things aren't working so well any more, so I'll see. I wanted to let you know that the Senta Clinic in San Diego has an M.D./Ph.D whose specialty is vertigo with migraine. I was recommended to him because I had some vertigo but not a great deal. He is VERY thorough using tests I didn't know existed. If you are interested, please read the comments on his web site. I'm not sure I'm allowed to give it to you, but the Senta Clinic would have it. Many of their physicians are not only listed as some of the best doctors in this area but also in the U.S. I have been thinking about you a lot and please know there are those of us out there rooting for you and wishing you help from somewhere! Virginia MK
1. dianems Member
 Hi Virginia, thanks for your note. I've been to a migraine/vertigo specialist also who tried several options with me. It seems I'm a very complicated case. San Diego is so far from Delaware. I really can't travel at this point. I appreciate your information and will read about the clinic when I can. I've been to several different headache clinics in Philadelphia and Johns Hopkins in Maryland with no benefit. I do appreciate your supportive comments and wish you the best also. Diane
mary55 Member
Hi Diane,I don't usually comment but your experiences with endometriosis hit home. I was diagnosed with endometriosis when at my first pelvic exam a cyst the size of a grapefruit was found and had to be removed immediately along with the ovary involved. I had migraines - not diagnosed until in my 40s- since I was around 10, when I had my first period. The migraines disappeared when I had the cyst removed. They came back in my mid 20s after I had my son. When I was pregnant I felt the best I have ever felt, I was never so healthy. About a year or 2 after I had my son the migraines started again. I had other symptoms that the endometriosis was back. It was severe enough that I had a total hysterectomy and my migraines stopped- for awhile. They started up again in my late 30s and I finally was officially diagnosed with migraine disease in my mid 40s. I'm now 60 and have was diagnosed with chronic migraine in my 50's. I had a meningioma removed when I was 53 and my migraine became severe and without any relief until this past year. I have been on disability since 2009. Anytime I have time without migraine - a few hours or maybe a rare day here or there, I count it as a gift. For the past year migraines have improved from 16 to 20 migraines a month to down to about 6-8 per month. I haven't had botox which had helped since last September due to breaking my leg in October and due to a lengthy hospital stay and complications from infection. I just couldn't face one more appointment due to imobility and my already busy schedule of dr. appointments and physical therapy. I have kept all of my neurologist appointments and have only missed a few physical therapy appointments. I believe this is all due to my month long stay in the hospital. I have been much more careful of avoiding all my triggers if possible, mainly my food triggers. I have several others but food is a big contributor. In the hospital I was taking percocet for pain and now take only one once in a while due to the pain I have from physical therapy. I don't think the percocet has alot to do with as when I'm off of it I still have migraine free days. That's my tale of woe, I'm sorry it is so long but I just couldn't find a shorter way to describe it. Thanks for letting me have opportunity to tell my story.
1. dianems Member
 Thanks for sharing Mary. I've tried to stay off many food triggers several times before with no changes. I even did a macrobiotic diet for 3 months and that was hard and intense. I lost 25 pds. doing it which was nice but it's a lot of prep work which I can't always do with my condition. It seems as though mine has lots to do with having 3 viruses especially mono. Who knows??? I'm hanging in there every hour as I can for now. My pain has improved greatly it's the vertigo that is more debilitating to me. Take care.
jodiedarracott Member
Hi Diane, Your story made me sad. I am a chronic migraine sufferer an have been for over 15 years. I had tried everything. As I have just started nursing school the migraines just stayed an never left until I have a daith piercing in my ear. I have been migraine free for 9 weeks an would recommend it to anyone. It is worth a shot. I can send you a picture of it. Jodie
1. dianems Member
 That's interesting Jodie. I'm not exactly certain what a daith piercing is. Yes, if you have a picture that'd be great. I pray for your recovery to keep on going. Thanks for writing. I am 61 yrs. of age now so not sure what I'd look like? Have short hair? ; o ))
2. Member
 Dear Diane. I have a migraine for the past 25 years.I am 39 now.For the past 7 years i've been taking ergot with caffeine as painkillers.They do help.But the last two months i drunk 120 of them and have a migrain every day.I can't belleive this is happening to me.Can I ask you :"Have you heard someone has had this situation as i have it now,i mean every day."Give me an information please if you know something.
dianems Member
Dear, 1mnw5ap I have heard of people having rebound headaches which happened to me for 3 yrs continuously every day without any breaks. For me it was because I took pain medication every day. Apparently, you cannot take pain meds. every day for migraines. You will get what's called is rebound headaches and they will NOT go away. It was difficult dealing with so much pain but I had to only take 3 pain meds. 3 days per week to break the cycle. During that time though they had to find a good preventive medication that helped somewhat to relieve my painful symptoms. It was horrible but in time that cycle did end. I had 3 injections per week only for my pain. I went to a headache clinic so they could wean me off pain drugs and try several preventive meds. My pain level is far better but my vertigo is still a real problem. Best of luck to you. Diane
KMBrigid Member
I am so sorry to hear of the pain that migraine and vertigo have brought you. I had migraine as a teen, and then at 40 began the hormonal migraine which chose to stick around after menopause. I began vertigo with migraine 14 years ago. It is not as bad now, but there are still days when I cannot walk. I use generic Zofran. Nothing helped my migraine. In the past 9 months they got much worse. I was unable to think, to remember anything, to function, to drive. So in desperation, and given that new information is available now about cannabis tinctures, and cannabis is legal in my state, I tried it. After 46 medicines, multiple neurologists, massage therapy, Chinese herbs, acupuncture, chiropractic, naturopathic treatments, total vegan diet, gluten-free diet (which I still observe), finally I have something that works. I take a tincture morning and evening. It is high in CBD which is the portion used for medical purposes, and low in THC, which makes one high. My migraine condition has vastly improved. I've gone from 3 level 9-10 migraines a week (and chronic headache pain continually level 5-7), I am down to maybe one breakthrough headache every week or 10 days. My other days I may have a mild headache, nothing that even needs medication. This has lessened the amount of acute migraine medication I take by 75%. I still have breakthrough vertigo, but rarely. This has been since July 21. Not very long but the difference is amazing. I am 66 and have my life back. I wish you prayerful and healing thoughts.
Amanda Workman Moderator & Contributor
<inline-mention username="dianems" user-id="3721312"/> I know you wrote this a long time ago. But when I saw your post, i simply felt the need to reach out to you. How are you doing these days? I hope managing your health conditions have become easier. Your ferocity for life definitely shows in your post and that is amazing. I say that it amazing because you despite your challenges, you have not given up. As you said yourself, you are still trying "new avenues." This is beyond commendable. I understand what you mean when you mention feeling like you are dying slowly. It can be so overwhelming to live with chronic health conditions, especially when the conditions contain so much pain. I did want to remind you that you are not alone. Here you have a community of other people who can empathize with you. Hopefully, you have found this community helpful. I have been down a similar road to your own. I am here if you need me. Sending lots of love and strengths = Amanda (team member)