Getting desperate

[FRANKJONES1]

In April 2015 I had was was suspected to be a TIA but in the end diagnosed as occular migraine. Since then I have been getting tired easily, regular headaches, a couple more occular migraines but then all went quiet early this year. Then in August I started getting tired again, headaches but nothing I couldn't manage. 3 weeks ago the whole lot returned with a vengeance. Symptoms vary. It started with a complete energy crash but no major head or visual trauma, just completely wiped out. The energy crashes are happening completely out of the blue but now I'm also getting the head pressure, disorientation, feeling faint sometimes, unable to concentrate, some headaches of varying intensity, spaced out, light headed, sometimes weak as a kitten, sleepy, etc etc. A feeling of having no control and that my life is taken over by this condition. My doctor thinks it could be Chronic Fatigue Syndrome but that's unlikely and she also suggested I refer myself to the London Migraine Clinic (though she may have meant the National clinic). My blood tests are normal and the doc says there's nothing more she can do. I can't plan ahead and keep having to pull out of engagements. I feel desperate and abandoned.

[Frodo]

I would get a print out of your blood tests and see what you actually had and see if you can look into the results a bit more. "Normal" doesn't always really mean normal. There may be other tests you could or should have had as well. If thyroid's been tested for example usually it's just the TSH that's done, and there are other tests that give a better indication. Presumably you had a brain scan when the TIA was suspected.

CFS isn't really an illness but a description of a collection of symptoms of unknown cause. Sometimes you can get it after having a virus so have a think about whether you had anything like this in the run up to developing these symptoms.

If you don't have any migraine history it's a bit odd to get these symptoms out of the blue. A relative of mine had stroke like symptoms first thought to be migraine, and after lengthy investigations it was found to be a heart problem. I don't want to alarm you unduly, but your instincts may be right as we know our own bodies.

I'm sure your doctor could do more if she wanted to. You should probably have a referral to a neurologist/headache specialist for a start if she's certain it's some form of migraine. Or possibly an endocrinologist. You could write to the surgery telling them your ongoing symptoms, the effect on your life and work, and how you are feeling, and tell them you need more help than you have been offered.

I do understand what you mean about having no control, the insecurity and not being able to plan ahead. I have that too and it makes normal life almost impossible. I use as many self help methods as I can to get by.

If you don't get any further, look at changing your GP.

[FRANKJONES1 in reply to Frodo]

Thank you Frodo. Your helpful reply is much appreciated. Hope your situation improves.

[FRANKJONES1 in reply to Frodo]

Dear Frodo. I took your advice and wrote to my surgery and today I have received a very conciliatory letter from my doctor who has discussed my case with colleagues. Low and behold she is going for 'further specific endocrinology tests' as a start, so many thanks for your help. Frank

[Frodo in reply to FRANKJONES1]

Oh, excellent result, FRANKJONES1 . Onwards and upwards.

[CarolineVi]

It can completely be related to migraine. I have to oddest symptoms that have taken over my life the last year since the birth of my baby. The only clue it was migraine was mild right head pain and a very sore neck. It took ages to get a diagnosis because symptoms were all over and so strange. But it is migraine. You have to understand it's your brain being affected and it can take you out completely. No one is the same and symptoms don't match what you read on the internet.

I thought my symptoms were thyroid for years because I had one low blood test. 12 years before it was diagnosed and all hell broke loose.

Keep reading about migraine. It's the weirdest thing ever.

[FRANKJONES1 in reply to CarolineVi]

Thanks CarolineVI.

[Hidden]

Hi FrankJones

Have you tried medication to prevent migraines such as topiramate or amytriptaline?

[FRANKJONES1 in reply to Hidden]

Not yet Liseanne, thanks. My GP's not really very clued up. I'm thinking I probably need to refer myself to the NMC

[troy04]

FRANKJONES1 GPs are human being and some of them can be daft, some of them can be lazy and a few of them can be very helpful. You can always see another doctor in same surgery - it does not have to be the same. You may also change your surgery all together (if possible). GPs have the freedom to do a lot more - they can try almost all those prophylaxis that a neurologist will / may try (if they bother) on you. There are at least 10 to 15 different prophylaxis for migraine and a GP should try some of those before saying "there's nothing more" she can do and yet admitting it could be migraine !!

We were discussing migraine / TIA with another member, if you have time please read this below thread:

healthunlocked.com/migraine...

Please try doing light exercise regularly (even if you feel tired) - that can be very helpful.

Also please try experimenting with your diets - there must be some food that can make your symptoms worse. Avoiding all kinds of red meat is a good policy (although not easy). Cheese can trigger headaches as well - and so is alcohol. Try to find artificial-preservative free food - it does not have to be expensive, you can find quite a few options in Aldi superstore (btw, I do not work for them )

I wish you all the best !

[babs1234]

Are you sure your hemaglobin was tested. They don't automatically test that but it's a sure sign of fatigue, weakness etc. These damn migraines. It's no wonder they find it so hard to cure, every one is different.

[FRANKJONES1]

Thank you Troy and Babs for your helpful advice, which I am trying to follow. Based on the comments I've seen, I've written to my practice as suggested by Frodo - not specifically to my GP - asking for further investigations. So far a deafening silence.

[FRANKJONES1]

UPDATE: well, nothing improving yet, in fact the tiredness, crashes, weird heads have become more regular, daily. The only new issue identified with further blood tests was an insufficient level of Vitamin D, which is all my GP told me in a 3 line letter. I have been taking a supplement but no change so far. The Migraine Centre has assessed that I'm getting migraines but I knew that and see them as a symptom rather than a cause. Vitamin B2 supplements have been recommended, which I've been taking but no change there either. I am about to write to my GP again but wonder what's the use. I have consulted a psychotherapist and start some treatment next Friday, so I'll see what that brings. All pretty cheerless really.

[FRANKJONES1]

UPDATE: After a reasonable couple of years with much the same stuff on and off, things have suddenly got really awful. I have been getting escalating headaches over the last 10 years with occasional migraines with and without aura. Recently they have been escalating and on 3 October I collapsed in the street and banged/cut my head on a car wing.. Tests showed there was nothing wrong with my heart or any other obvious cause but 3 days later I started getting serious dizzy spells, which increased in intensity. with bad headaches. I managed to get a referral to a Neurologist on 10 Nov. and saw Dr Dennis Chan. He diagnosed that I had Vestibular Migraine and prescribed 80mg daily Propranolol. The headaches have mostly eased but not the dizziness, in fact it seems worse. Sometimes it eases off and I can function ok. Today I was ok when I got up this morning then I went back to bed for a spell and when I got up again I was really giddy. I've been like that all day and my head is tight. I just can't function properly and I feel I'm just sinking further. I don't even feel able to go out for a walk at the moment. I am fairly senior and I live on my own. If I can't drive, it is a severe handicap. I am persevering with the beta blockers after chatting to my pharmacist who advised that I try to stick with it as long as I'm not falling over and things will settle eventually.. I am alarmed by the whole business. I was used to the headaches but this is a step much further and the fact that it came on after I banged my head doesn't seem to be significant to anyone. Also, I feel very much out of the protective system having gone for private attention in desperation , which is limited to 2 consultations plus I will be having an MRI scan on 24 Nov and a follow up consultation on 1 Dec. I very much feel my balance is affected and perhaps I should be seeing an ENT consultant. The problem is that NHS waiting lists are at least 6 months and my GP practice, never pro-active at the best of times, is pleased to leave me to it. Maybe there is nothing else to be done at this stage but I would be interested in your advice and grateful for some reassurance. Reading back to the comments 3 years ago, I'm obviously not the only one suffering and there are various levels of attack. Frank