Migrains from hell

Hi I wonder if anyone could help me with some advise I am a 29 year old male I suffer with...

PoTs, MCAD, EDS and just recently in the last 6 months server debilitating migraines and this is what I am struggling with...

they normally start with blind spots in my vision, The pain I have makes me sick always on one side of my head and lasts for days its slowly destroying my life and worsening my normal day to day health problems..

Does anybody have any tips or ideas what I could do many thanks in advance JJ

29 Replies

  • Hi JJ,sorry to hear about your migraines. I get them as well. When I get a 2 to 3 day, head thumping, can't see, nauseous headache, it's probably caused by something I ate. I have to avoid eggs, soy, most food additives, etc. Have you tried an elimination diet?

  • Not yet but I am seriously thinking about it incase it is that as I have many allergies aswell its hard to pin point anything thanks for the help all the advise is great

  • I would try to identify if you have any triggers. Mine are lights, noise, chocolate, strong smells, stress and dehydration. Oh and hard pillows, yes I know random but hard pillows always give me a migraine. Also try neck exercises to strengthen your neck muscles, helpful with the EDS. When I have an attack I use ice packs on the back of my neck and on the top of my head. I also make sure to drink plenty as I'm usually sick and hate dry heaving. I have read putting your feet in warm water helps as it diverts the blood away from the head. Not sure if that works. As you have EDS it's important that you work to reduce the tension in the cervical area as that can impact on the frequency and severity of attacks.

  • What is EDS?

  • Ehlers Danlos Syndrome.

  • Ethles danlos syndrome or (joint hypermobilty) I have vascular EDS

  • So sorry to hear that. Glad you know and I hope you have good medical staff around you.

  • My migrains always affect me neck also great advise thank you I will try these I cant live without my pillows lol...

    Im going to try all these cheers

  • My son & I both suffer with horrid migraines, so I really feel for you, for my son his trigger is dehydration, this I have read is quite common in men, how much water do you drink per day? My son aims for a minimum of 7 pints per day & avoids any caffeine or fizzy drinks, it has helped him enormously. For me amitriptyline was my savior after being prescribed a whole manner of every drug going, hope you feel better soon.


  • Thanks jayne I do not really get dehydrated but I do not drink as myuch as I should.. im laid up again now with 3rd 1 this week gp has prescribed me some preventative drugs to help stop the migrains before they start fingers crossed. due to my other health problems I am suppose to have increased water and salt intake its just remembering lol x

  • Drink, Drink, Drink & not alcohol!! LOL, hope you feel better soon.

  • Luckily I don't drink alcohol lol x

  • Hey Jayne, what dose of Amitriptyline did you have to get to to get full relief?

  • Morning Katherine

    My dose of Amitriptyline was initially very high at 100mg, due to horrendous recurrent migraines every other day for 2 months, which left me hospitalized with left hand side paralysis, they had tried every drug going even anti-epilepsy drugs which was not a pleasant experience!! The Amitrip stopped the cycle in its tracks, although I was pretty dopey, anything was better than the migraines. I stayed on this dose for 3 years, then it was gradually reduced over a further 2 years, I now take only 25mg per evening. However like some others have said, I am unable to take any other migraine medication, they actually make the situation worse. So when I get a migraine attack, now usually only once or twice a month I take 25mg of Amitrip to reduce the attack.

    Hope that helps


  • I agree with aineyy, you can't drink enough water! And maybe avoid caffeine/alcohol or any stimulants for a while as that might help, as for food triggers, if you are getting constant headaches I personally wouldn't think it was to do with your diet? The best £15 I spent lately was on a phone consultation with a specialist nurse at a Migraine Clinic (you can find them easily on Google) and I then went to see Dr Andrew Dowson at the Surrey Headache Clinic in Guildford (most of the staff suffer from migraine so they know what you are going through). They explained that my 'system' had become over sensitive and the things they said seemed to make sense, also reminding me that it's just muscle so try and relax (I know easier said than done). They recommended a Magnesium supplement called Dolovent, I also take a daily soluble Aspirin. They said Amitryptaline would be good as in low doses it works to relive anxiety and can be gradually increased until (hopefully) you find relief, and that is exactly what happened with me :-)))) I was reluctant to start taking another long term medication as I have 2 auto-immune problems, but after a few months of being headache free they say I can try and wean back off if I want so I didn't feel too bad about that.

    I really do hope you find your solution - get a check with an optician, get your GP to refer you to a Neurologist too as they ought to scan you? Good luck.

  • Thanks so much that's all really helpful I went to my gp yesterday referral done to get checked.. im going to try the consultation all good advise thanks so much lovley people x

  • Yes this is a great little community and it's good to know there are others going through the same thing that can offer their advice. What I have found is, as there is no 1 cause, there is no 1 treatment so what works for 1 person doesn't work for another. You must strive to find YOUR solution and don't stop bugging your GP. I'm not sure the Neurologist gave me the best advice either, you may want to check that the 1 you have been referred to actually has an understanding of Migraine and bearing in mind you will probably have to wait a couple of months for the appt to come through, try ringing the Headache Clinic asap. They might be able to give you some advice on best over-the-counter meds? Best wishes

  • Thankyou kathrine I have enough with my other health problems without this on top. Ill call the headache clinic where do I find the details for them? X

  • This is the clinic I went to in Guildford Surrey surreyheadacheservice.co.uk but if you aren't within distance you will have to Google 'specialist headache clinic', there are lots in London (check their reviews). Some of them offer a telephone consultation which might be all you need, to be honest they can't 'see' a headache so sitting infront of the Consultant won't help eh! 1 small problem was the Clinic that gave me advice over the phone suggested a medication, but my GP wouldn't write the prescription. Once I got a private prescription from them, my GP agreed she would continue to prescribe on the NHS. Good luck JJ

  • I would look into starting a prophylactic migraine treatment I put it off for nine months and I just started last week I hit the end of my rope I should've started sooner

  • So Wolfiesmom, what are you taking now, and has it given you good relief?

  • I just started nortriptyline last 10-12 days at 10 mg it's not the first line of treatment for migraines but I have an autoimmune disorder that causes a lot of fatigue and nortriptyline helps with fatigue so it's kind of a double benefit. So far I've had one migraine since starting it but I usually would've had two or three by now. I'm hopeful but I also see a neurologist on Monday for a second opinion. My regular GP prescribed the nortriptalyne.

  • I'm on Amitriptyline, started on 10mg, and at 20mg I didn't have a headache for 10 days which is a record for me this year! But then I got a corker of a headache, the worst for ages which lasted 3 days, so have increased the dose again to 30mg (my specialist said I might need to get to 50mg for full benefit).

    I have just copied this from an article online "Protriptyline is not sedating and is effective for daily headaches, but not nearly as effective for migraines as is Amitriptyline. Nortriptyline is less sedating than Amitriptyline, but much more expensive and not as effective." so I was surprised your Doc suggested Nortiptyline, especially if you're NHS as they usually go for the cheapest drug on the list ;-)

    Google your Neurologist and see if they have 'an interest' in Migraine as the NHS Consultant I was referred to did not (!) and so I asked to move onto the list of a Consultant that did, but it took another couple of months for his clinic to come available. All the best xx

  • Thank you so much for your time and input I'm here in the US and I'm having to travel an hour and a half away just to find a neurologist that has interest in headaches it's also covered by my insurance.

  • Yay, I wish mine was, I've spent over £1500 visiting different 'specialists' in the pursuit of an answer -if only they would all concur! x

  • I didn't find any benefit in a preventative medicine, I suppose we are all different. I also found that migraine medication also prolonged my attacks. So the migraine became more bearable for longer but left me wiped out for a few days after. I try to identify and avoid my known triggers and I know the early signs of an imminent attack. If I drink plenty of fluids, lie down in a dark room and take Panadol extra, only works if I notice my neck muscles tightening (this is the start for me, usually several hours prior to the pain starting) I can significantly lower the severity of the migraine. This comes after 35 years of living with migraine, trying loads of different medications and eventually figuring out my body reacted badly to the medications I was using. Everyone is different and has a different path to travel to find how to manage their migraine. I truly hope everyone finds a way to control theirs.

  • Hiya I think you are correct ive been taking sumatriptans and they do help but the headache goes on and on.....

    Also I have not yet found any relief from what they have prescribed me so what your saying is so true I have had a constant migrain for the last week and i am at braking point i also am finding fluids and ibuprofen more effective than anything and natural remedies 4head, cold compress etc.

    Mine always starts with blurred vision and blind spots in my eyes then between one to two hours later the pain starts..

  • JJ and Aishah - I was told that Sumatriptan gives a 'high' but in many also a 'crashing low' some hours later, so what you both might have been feeling was the effects of the Sumatriptan. I did not find it helped me much with the headache intentsity or duration, plus I felt depressed for a day or two after taking it. They might suggest you try an alternate Triptan, but for me Rizatriptan was even worse!

    So like you, I stick to over the counter pain killers, alternating ibuprofen and paracetamol every 2 hours, hot water bottle on my back sometimes, or a cold pack, whichever I feel might do the trick! 4head stick is good too, simple but effective!

  • Hi JJ,

    You will have very subtle signs in your body, mines stiff or achy pains in the back of my neck and my skin feels tender. These are very subtle signs that I found out after years if migraine, no dumb comments please, and if I take panadol with caffeine, at this stage I can stave off a full blown attack. These are the signs prior to the blurry vision etc: If I drink water and lie down after taking the panadol I'm okay after a few hours. If I'm pig headed and carry on, then I have to take further doses of medication. This only works at the very on set of symptoms. I stay away from ibruprofen as it can damage kidney function after long term usage. I have chronic Kidney Disease ( just found out) so Doc says no anti inflammatory medicine, including over the counter. Migraine in and of itself is a symptom of another biological process being compromised in the body. I.e. Lots of people have food triggers ( their body is intolerant to that food and the migraine is a symptom of the body dealing with it) or get migraines when they don't drink enough water, ( dehydrated migraine is a symptom of dehydration). We need to be a bit of a detective and try to figure out what our body is telling us. Western medicine is all about symptom suppression, have a pain, take a pill, suppress the pain. Don't find out what causes the pain. Rather simple explanation but generally true. We need to be proactive in finding the root cause of our symptoms. Our body is designed to heal itself if we give it the right fuel. I'd look at my diet to see what I'm eating that may be causing my body problems. Good luck with the sleuthing.

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