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Someone slap me back into line please! :/

Hun if you’re not comfortable taking the beta blockers due to your blood pressure, you must discuss this with your specialist as there are tons of other meds that can be trialled.

Every time I took a tablet, I forced myself to smile at it and I used to say “come to me little pill, for you are going to make me well”. Nutty I know, but I had to force myself to have confidence and faith even if it was all bravado.

Own it. Don’t let MAV/VM own you. Ever.

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It’s definitely worth trying the meds Dee. I don’t think it matters too much if you have lowish blood pressure on Beta Blockers. Some people with low BP seem to do really well on them, others (like me) with normal/bordering high BP did not get on with them at all. They are considered quite safe by doctors I think. You have nothing to lose x

Great post, this is exactly how I am spending my days at the moment, trying to match my symptoms up with diseases. I’ve come across all the same things. Candida, thyroid etc etc. I just can’t believe a migraine can cause these problems. Plus, I do have some odd symptoms which I have never found under MAV (which I have been diagnosed with), especially the white tongue in the morning, which seems to suggest candida. Although I don’t really believe in candida to be honest.

I am due to go back to my neurologist in 4 weeks (there was a 6 week waiting list and I am private !!) after my trial on amitriptyline went pretty bad.

It is really difficult to accept I just have migraine, every now and again I spend weeks online researching different illnesses.

— Begin quote from "dizzyk"

It is really difficult to accept I just have migraine, every now and again I spend weeks online researching different illnesses.

— End quote

This is exactly what I keep doing too! This, plus worrying about those “odd symptoms which I have never found under MAV”.

Most of us have been there. In fact, so much so that I think that they should add both of these to the official symptoms list:

  • “spending all your time online researching different illnesses”
  • “have odd symptoms not found under MAV”

:smiley:

Ha, yeah, exactly, The worst one for me is the pain in my heart and numbness in my left hand. That’s kind of scary. My neurologist didn’t seem to think it was a very common symptom with migraine, so I keep thinking there is an underlying illness that is the root cause.

Thanks so much for bringing this up, because I recognize a lot of what is being said by you all. Especially the 'worrying about odd symptoms which I have never found under MAV '! And the neurologist said it is atypical for MAV I never had any classic migraine headaches ( no attacks lasting max. 72 hours) but ‘just’ chronic longlasting headaches without aura or nausea.

Years ago I travelled the same road before ( and after) I was diagnosed with CFS ; so many illnesses have similar symptoms and it caused a lot of anxiety and fear thinking( 24/7) about what could be wrong with me. And now, with this new diagnosis, it starts all over again ; ’ May be it is Meniere’s after all, or may be Lyme…’ .
This is not a healthy thing to do, but…
I am glad to know my behaviour is not unique!

I thought i would type out the letter forwarded from my neurologist to see if everyone thought what he had said was the norm/good:

Thank you for asking me to see this 39 year old. Clearly it was important she had a thorough ENT investigation and in particular an MRI scan of the brain to exclude an inflammatory cause for her symptoms. However, with this now complete and with the very strong family history of migraine in her son (from age 5) and her mother, i wonder if this is an unusual variant of vertiginous migraine. The feelings of vertigo definately interact with more typical sounding migraine headache, though the latter are usually mainly catamenial in her case. The symptoms fluctuate and she has days which are much better than others rather than a progressive story. I have explained that the incidental small arachnoid cyst is not relevant. It was interesting that many of these symptoms got worse during first trimester of pregnancy but then settled back down again, which is very typical of migraine, though not specific of course.

The neurological examination is normal which adds further reassurance.

I have suggested starting with a beta blocker if this is tolerated. I would use Propranolol and begin at low dose twice daily, increasing as tolerated. She should try and keep a diary of bad, less bad and good days so that she can see if there is an overall improvement if not complete. I would keep it going for at least two months before giving up. A second line drug would be low dose Amitriptyline, again beginning at 10mg at night and increasing as tolerated. She understands we are not using this drug as an anti depressant. Third line would be Valproate or Topiramate. She has four children now and has no further plans for anymore. She understands it would be good to exercise good contraception if she is taking an anti convulsant or indeed any drug for safety.There are some good guidelines on the use of prophylactics in migraine at www.bash.org.uk

I would definitely recommend giving the beta blockers a go. I was hit with this in January 2013, was put on proprananlol, I slowly got up to 250mg, and felt a million times better by April. I am not very well at the moment so am more dizzy than I have been but I still have faith in the meds!!!

Good luck. I hope you feel better soon

Kathy x x

Dee–

Beta blockers are self limiting. Take it from someone who LITERALLY HAS a fainting disorder. I was diagnosed with a parasympathetic disorder that causes severe bradycardia (slow heart) and drop in blood pressure when under extreme stress (injury, fright, trauma, the other side of fight or flight response etc). My HR can drop to as low as 12 BPM and my Blood pressure can drop to undetectable levels. Guess what the treatment is for my disorder? BETA BLOCKERS!!!

So, take a girl who can suffer from a crashing BP and give her a beta blocker—hmmm.

But the science is valid–beta blockers work to “block” the chemicals that can cause arhythmias and high blood pressure–also those that can cause sudden and unusual shifts in blood pressure (up/down). They help to keep you on an even keel. Thing is that research seems to bear out that beta blockers tend to NOT cause BP’s to drop below a certain threshold. That doesn’t mean that you can’t feel really uncomfortable–thus experiencing side effects and deciding that a BB is not for you–but as for safety–they are generally safe to try as a first line drug for things like migraine.

You’ve been spending 2+ years trying your best to beat this thing on your own. I give you so much credit for your effort. STanding Ovation for all the hard work you’ve put in–but now–I think it is time to let medicine give you a bit of help. With all of your additional work, it may not take much to get you the rest of the way toward health.

Unfortunately–there is no icon for fingers crossed. But they are–for you…

Thank you very much everyone…i got my Propanolol prescribed today and was told to start on a low dose of 10mg before bed and then move to 10mg twice a day if tolerated. If seems ok then dose can be further upped along the line. I am soooo scared to take them…sounds stupid but didn’t Michael Jackson die in his sleep from Propranolol? I was one of his biggest fans lol Seriously, scared to start them now, maybe tomorrow…i know i should.

No. It was propofol infusions. Nothing related to what you’re taking.

I woke up this morning feeling quite dreadful, and dreadful in a rather different way than usual for me. For a while I didn’t imagine I’d be getting up today at all but after a cuppa and taking my Propranolol pills I lay back in bed waiting for them to kick in which they did some thirty minutes later removing a lot of the rear head pressure I got up. Thanking whoever invented the beta blocker I got up trying to think what may have caused this blip. Only thing I can come up with is the fact I went outside late last night in the pitch black, no street lights in open countryside where we live, looking for the dog when she didn’t respond to my call. I know since chronic MAV I’m no good in the dark. Why I didn’t switch the outside lights on I don’t know. Didn’t think it was that dark I suppose. Dog and I came back indoors quickly, the dog quicker than me. It didn’t make me dizzy and I didn’t fall or even feel I might but perhaps that’s what did it for me. I do think the Propranolol struggles to control my symptoms and I should Add In so I started looking around and as before never ceased to be amazed at the wealth of archive material on this site. Hence I bumped up another old thread which with such an obscure title the wealth contained therein could easily be missed.

Six years on, nothing’s changed. This neuro’s write up is virtually identical to one I was given:

@dokfnivr’s” post I found particularly interesting. And relevant to @mav’s recent neuro experience and @jojo65’s comments thereon. Still leaves me looking (cannot have Ami and won’t try anticonvulsants on principle), but interesting all the same. Helen

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Hi Helen

Im EXACTLY the same in the dark…it makes me feel so " lost". My other half has to get up and put a light on during the winter months before i can go to loo etc…
Any way you maybe can give Venlafaxine a go? Just a low dose? X
Jo❤

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Haha. What a perfect illustration of medical dogma this Topic is. “Slap me back into line”. Quite, don’t you dare disagree with the establishment on what might be going wrong with your health.

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This topic was automatically opened after 13 days.

Make the establishment know you are disagreeing with them.

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I’m sure we have all been there, this illness is so relentless and frightening it really screws with your head. MAV started for me after a neck injury so I was terrified I’d had a stroke, had a CSF leak, or something else important was broken inside my neck. My GP thought I had MS. My advice is if you are worried get everything checked out, get copies of your MRI and test results so you can read them again when you feel anxious. As much as taking a medication is scary and unpredictable my MAV would not have improved without taking Amitriptyline, anyone who is suffering deserves to give themselves a chance of recovery. My progress has been slow, frustrating and not linear and every day I feel different sometimes better, sometimes worse, but the medication has helped so much.

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Jess, you’re an inspiration :sparkling_heart: Good job toughing out the rough days knowing there are better days ahead! :smiling_face_with_three_hearts:

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You are an inspiration to me Renee! :laughing: