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Migraine, Antihistamines, Vascular issues; is there a connection?

I’m a 24 years old female dealing with chronic unexplained health issues. I’ve struggled with migraines since I was 11 years old. Familial migraines with stroke-like symptoms (partial vision loss, aphasia, numbness in my limbs and face, Alice in Wonderland syndrome, etc) to be exact. My grandmother has suffered from them all her life and later on developed some pretty serious neurological issues and ended up having a stroke a few years ago. My mother has them also, but not as severe. Luckily this type of migraine only happens to me a couple times a year. I’m between I’ve always had a lot of headaches/milder migraines in between but nothing too life altering. Until a couple years ago. Summer of 2020 I suddenly got so sick. I would get terrible head and neck pain, severe nausea, my balance was off, I felt very week and had a hard time holding my head up, extreme fatigue, I’d feel very hot almost like I was having hot flashes. This went on for a couple weeks. I saw my doctor, had blood test after blood test, autoimmune panels, tested for Mono & Lyme), MRIs, CT Scans, everything. They couldn’t find anything wrong. I’d get up in the morning and be to work at 8am feeling fine, but by 10am-12pm I couldn’t function and would go home and go straight to sleep. I thought I was going to lose my job and genuinely felt like I might die. As a last resort, I took some cold medicine following the advice of my doctor who was hoping that maybe this was just a bad sinus infection of some sort even though I didn’t have a runny nose or congestion. Almost immediately I felt better and would feel somewhat normal until it wore off. When I ran out of that medicine, I had to buy a different brand. It did nothing for me. I went right back to being as sick as I was before. The only ingredient that was missing in the new brand was Doxylamine Succinate, the antihistamine used in Unisom. It’s specifically a first generation H1 blocker that crosses the blood-brain barrier. I figured that had to be what was helping me in the previous medicine and picked up a bottle of straight Doxylamine. It helped. I never felt 100% again, but it was the only thing that enabled me to get out of bed. Fast forward 2 years to now, and I still have to take it at least once a day, sometimes more, to avoid falling back into the horrible unexplained sickness. A couple months ago, I tried to stop taking it for a 48 hours. I ended up with such severe head pain that I couldn’t hold my head up straight. I could barely even stand up, I was so weak and nauseous. I felt like I was overheating. I actually vomited after trying to go about my day and ended up in bed, not feeling right for days after. Other antihistamines that I have tried do not help. I can’t for the life of me figure out what is wrong with me that specifically this drug helps, but I don’t want to keep taking it forever. It’s not safe for long-term use. I’m already having some side effects like weight gain and memory loss for being on it constantly for 2+ years. I’ve talked to multiple doctors and they all think I’m crazy. No one has offered any insight at all. Another thing I’d like to add is that it doesn’t make me feel tired the way that it should. It actually seems to lift the fatigue I feel what I take it it. Things like caffeine, nicotine, stimulant medications, sugar, heat, and hyper focusing on things also induce or worsen that awful sick feeling I’ve been writing about. Depressants like alcohol and muscle relaxers offer short term relief. Could I have some sort of vascular issue causing migraines? Is the Doxylamine possibly helping to relieve some kind of inflammation in my brain? Could depressant medications be helping to calm some over-active part of my brain? I’m looking for any sort of information, insight, or similar experiences. I’m so scared because I seem to be getting worse. I’m having severe head pain and nausea almost every single day. Sometimes my head feels like it’s going to explode. I feel faint and get hot flashes. My arms and upper body will feel very weak. The Doxylamine helps me get through my day, but just barely, and I don’t want to have to keep taking more and more of it. I feel like I’m losing my quality of life and the person I used to be and my doctors don’t seem to care or even take it seriously. Any info from anyone would be so greatly appreciated. I’m on a wait list to get in with a neurologist, but that won’t be for a few months.

  1. Thank you for reaching out and sharing your journey with us. I hear how frustrating it is to be sick all the time and have all blood work come back "normal" - UGH! It makes things worse when we feel unheard by our medical team. We hear you and get it!

    I wish I could answer all your questions - the this is we can't give medical advice. I can share information with you that you may want to discuss with your doctor.
    Migraine is thought to be a neurological disease falling on a spectrum from mild to severely debilitating and everything in-between, which seems to impact us all differently. Having said this, I would encourage you to continue to look for answers from medical professionals who understand that quality of life is being impacted.

    I'm going to share information on histamine and migraine that may be useful; I don't believe Unisom is meant to be taken every day. I wish I had more information for you. I'm sure others will be along shortly to share their experiences with you. Will you keep me posted? Nancy Harris Bonk, Patient Leader/Moderator Team

    1. Thank you so much for your response and for sharing the info on histamine migraine. That’s basically the kind of thing I’m looking for. I know it’s not wise to seek medical advice online and that’s not really my intention, I’m just trying to collect as much info as I can and possibly hear from people with shared experiences. It may help me be more aware of things I should bring up to my doctor or my neurologist at upcoming appointments. This is my first time making a post like this of any kind on any site and is really just a last resort attempt to learn more about different types of migraines, especially kinds that may be affecting me. I know unisom can have some dangerous side effects when taken for a long period of time which is why I’m trying to figure out possible reasons why it prevents migraines so I can get to the root of my problem and hopefully not have to rely on it in the future. Thanks again, I appreciate the feedback!

    2. I hear you, thank you for the update. I look forward to hearing more from you. Nancy Harris Bonk, Patient Leader/Moderator Team

  2. I'm so sorry you're going through this! I just had a suggestion. Have you been completely allergy tested? And i don't mean where they take a little blood. I mean the full spectrum, 100 pokes on the back, allergy tested. Remember, not all histamine blockers work equally well on all histamine reactions. I think you should follow the histamine and allergy connection to its absolute conclusion. I'm not trying to give medical advice. If you have to really think about it, there's a definite reason why a histamine blocker gives you some relief.

    1. How annoying to be made to feel that way! Ugh, I'm frustrated for you. Remember that your doctor works for you and should support your healthcare goals, even if they personally don't share the same feelings. Definitely seek a referral or a second opinion if you feel things aren't changing. Your thoughts should be a valid part of the conversation! Hang in there. -Melissa, team

    2. It's terribly frustrating and defeating when a physician can't give you answers, but also gaslight you. The whole "going on google too much" comments angers me as well. She couldn't give you answers yet didn't entertain the idea that maybe it was something that you've been researching and could possibly be the issue. In my book that is something that would make me search for a new PCP. I expect (as a patient) to be heard and respected - and that's all wrong on many different levels. It shows her professionalism is lacking amongst other things. Advocating for yourself can mean "firing" a physician if you feel they are not on your side. Hoping her indelicate way has not persuaded you into thinking there is nothing wrong or your health isn't important - it is. Here's a link that may help you advocate for your health. Wishing you well. Rebecca (comm advc)

  3. I have not been allergy tested. For some reason, my previous provider did not think it would be helpful (I don’t think she fully recognized the possible connection between histamine and migraines), but you are absolutely right and I am going to revisit it

    1. , As part of our journey with migraine disease, it's essential to either advocate for yourself or have someone you trust help advocate for you. Often this means having deeper discussions with your doctors and being persistent until your questions and requests are validated. It's vital that you understand the information you receive and that your doctor sees, hears, and understands you and your experiences. There are some really excellent, caring doctors out there, but you need to stand your ground and get to a point where you are comfortable with the care you receive. Warmly, Cheryl team

  4. Hi - Thank you for posting and sharing your story with us! I encourage you to continue talking with your medical team, and I'm glad that you're going to see a neurologist in a few months. I'm not quite sure why the Doxylamine is helping, but hopefully your neurologist will be able to give you some insight into what is going on. I find it interesting that the Doxylamine helps because I have heard from another community member here in the past that they take Benadryl on a semi-regular basis for their migraines, which is also an inverse agonist of the histamine H1 receptor.

    I see that you're also going to re-visit allergy testing, and perhaps that will also provide you will some answers as well. Please do keep us in the loop on how that goes. I wish that we had more answers for you about how all of this was connected!

    Wishing you well,
    - Cody (Team Member)

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