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Severe migraines since my stroke
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itmatsb posted:
Has anyone else had severe migraines since their stroke? Has it ever ended? It's been almost 3 years since mine at the age of 56. My neurologist thinks that my sudden different migraines following a hard crash to my head were the beginning of a carotid artery stroke that I got about 3 weeks later with paralysis and speech difficulties. I am disabled from doing much activity because it drives the migraines to terrible. Exercise is impossible. Also I've needed 11-13 hours of sleep every night or the headaches get far more severe. I need the ER about once a month.

I began with an opiate "Lorcet" and ultram for 8 months before getting my current neurologist (along with two other neurologists) who got me off of the daily meds with nerve block injections which helped as well as Botox which started 1 year ago. But I am still very disabled from the headaches. Yes, I've tried all the prophylactic meds with no relief or bad side effects. I've just ordered an herbal "petadolex" a butterfew extract.

I'm currently severely depressed with the quality of my life. Does anyone know of anyone else with this severe disability? Does it ever end?
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Richard C Senelick, MD responded:
In over 35 years of practice I have never seen someone with intractable headaches after a stroke. I have seen many patients who have been troubled with chronic headaches after a mild head injury and I wonder if the "hard crash" was the cause of your headaches.

It sounds like your neurologists have tried the usual approaches and even some of the more unusual, including Botox. Since you have seen multiple neurologists, a routine second opinion is not going to be much help. You might ask your current neurologist to suggest a speciality headache clinic. They may have access to clinical trials of new drugs or have experience that others do not. Not all cities have such a clinic and you may have to travel to another city. Once you get the name of a clinic you can call and tell them your story to see if they think they can help. Many headache clinics will have an inpatient component to treat patients with intravenous medications to break the cycle of headaches.

I wish I could be more help. Good Luck.
After your stroke you may be experiencing a new normal, but remember what George Eliot said- It is never too late to be what you might have been. You still can achieve new goals.
 
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itmatsb responded:
Thank you for your prompt help Dr. Senelick. I appreciate it.
 
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itmatsb replied to Richard C Senelick, MD's response:
Thanks for your previous reply. Just to let you know that I have since scoured the internet for medical studies on especially carotid artery dissection strokes which showed that some people can suffer weeks, months or even years after the stroke with migraines.

The kind of stroke that I had of course only affect about 5% of the total strokes, so not surprising that you may not have seen anyone with chronic migraines after a stroke.
 
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kristy1210 responded:
hi
My name is Kristy who also on disabilty since 1998. I was born pthree months early. When i was born my esphosug wasnt attached to stomach. Was in the hospital half of my life. Had
about 23 operations.
I was able to graduate from high school,play sports, socialize with friends.
In 1997 i got married to high school sweet heart. Then 2000 had first child. Pregnancy was great, best of health. After having our son . My health went down hill. Lung infections , pain medications, depression , anger.
In 2005 my husband at time started cheated on me. He did this until i had enough . Told him i wanted a divorce and
and moved out. Even when my son and i moved out . He continued to effect my health. By the stress, frustration, what he putting our son througt.
So for long time my pain was so bad i was unable to drive, sports, socialize ect.
Rightnow i have been experiencing numbness, in face ,leg arm too. Trying to figure out if it stress, nerve damage! I would love to get to know you ! I'am sure we have alot in common.
 
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itmatsb replied to kristy1210's response:
Hi Kristy,
I am so sorry to hear about your difficulties. I am concerned about the amount of pain that you describe. Is it esophageal pain, migraines or some other part of your body? Is it a new kind of pain that you didn't have before? Have you seen a doctor?

I will tell you something interesting. I was severely depressed when I saw my doctor at about the same time as I wrote that first message. My life was so restricted by my migraines that I couldn't enjoy anything. My doctor wanted me to increase my anti-depressant as well as get counseling. She was afraid that I might commit suicide because a certain percentage of people suffering from chronic pain do that. I told her that my grief was so situational that I didn't think that an anti-depressant could possibly help me. And I never got the counseling. What many people don't know is that anti-depressants are also pain killers. My current neurologist wants me to increase the anti-depressant even more to treat my pain. I did increase it 5 months ago and as if by magic my depression cleared up. The anti-depressants and the new herbal med might have contributed to me feeling better because my headaches got better. Don't know. But I still struggle with the chronic pain and am definately feeling better. I hope you don't mind me saying this--it sounds like anti-depressants could help you.

In any case, I really do hope that you can be helped.
 
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undefined replied to itmatsb's response:
To itmatsb,
I hope this message finds you well. I see these posts are acouple of years old. My boyfriend has suffered almost identically your condition, stroke resulting from carotid artery dissection, which occurred from a helmet strap crushing his corotid during a high spead boat racing accident that also caused head trauma. His chronic migraines have worsened and are now a daily part of life 5 years later. He is depressed and withdrawing from life, barely sleeping because of the pain, losing all quality of life. He's running out of hope and after a round of botox treatments in his head without any effect I've just read suggestions for migraine specialists. I hope you have found some relief and perhaps a doctor to recommend? we're in the New York tri-state area. He/we are getting desperate.
Best,
Brenda
 
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itmatsb replied to 30255684's response:
How good of you to be there for your boyfriend. Yes, I have since encountered a number of people who got severe migraines following a stroke which does make it very difficult to treat. Since I wrote that, I am far better. You mentioned that your boyfriend has tried Botox. Was the dose significantly increased after it didn't work? That's what needs to be done, as my injections didn't work until the dose was increased. I went on Butrans patches which have stopped all of my ER visits.

Plus since my posting when I severely depressed, my doctor told me to get counseling and increase my anti-depressant. I told her that since it was situational, no drug could possibly help. I did not have the time to get counseling, but just increasing the anti-depressant, completely cured my depression a month later. I couldn't believe it! I still had the same terrible life. And I believe that the anti-depressant also helped a little with the pain level as they are known to also be pain killers. So I would recommend that to you also.

Also I really need the nerve block and trigger point injections, which also have helped me. Plus when I stopped taking the herbal Petadolex, Magnesium and CoQ10, I got the worst migraine since my stroke, so that convinced me that those were necessary as well.Now my migraines are mild most days and I have adjusted to my limited life style and am very happy with what I do have in my life.

Please let me know if your boyfriend has tried what I have talked about. I'm not in your part of the country, but your boyfriend needs a pain management doctor. Wish you the best.


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Richard C. Senelick M.D. is a physician specializing in both neurology and the subspecialty of neurorehabilitation. He did his undergraduate and medic...More

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