Screaming from the top of my head

10 or 16 years … I can’t remember?
Migraine has stolen that from me, not being a person that takes time into consideration a lot!
Until I think about the time that’s been stolen, time it’s taken over and over to reinvent the new me,
I’ve forgotten! More than I’ve remembered.

I had a very clever funny friend call me today. I love when he calls me.
He makes me think, he makes me laugh and not ponder on the reality.
He’s honest true, makes me cry too!
Being himself, as he knows how.

Hope I meat you in the flesh one day,
I’ll cry, but you’ve already heard me do that, explaining my pain.

Thanks Scottie,
Youre a real Aussie friend, true blue to the -point of being my mate!

jen :wink:

Amen to that sister!!

Scott - when I’m well enough to move back to New Zealand, I’m buying you coffee without the coffee part - when I pass thru Sydney.

Rock star = you. :mrgreen:

Hey Muppo, do you ever wonder **during a migraine ** if your gonna die?
Sometimes I feel like it couldn’t feel much worse, and I might die this time, I say to myself and God, bring it on … I dare you. Melodramatic, but true.
I’d just go with it too, I dont fight the feeling anymore…and it still feels like I’m having a little death.
I’m not as scared of dying as I once was. At least MAV’s given me something positive I spose. :roll:

Last year I remember lying on the floor alone in my house unable to walk, limp, thinking this is it hey?
My Lordy what we go through.



I hear you loud and clear!

I said to my parents when I was at my worst ‘it cannot be possible to be this ill and NOT be dying!’

When I was really really ill in Feb/March I just wanted to end it because it was 24/7 and waking me up 6 times a night so I couldn’t even escape it in my sleep. I just couldn’t believe there was no respite.

This condition is unbelievable. But I’m a wilful soul and believe that we can find something to help.

I’m doing really well on the Nori (30mg p/n) but I’m far from 100% but I don’t feel like I’m going to die each day like before.

Hope you’re doing well Jen. What are you taking now you’ve weaned off the Valium?


Hey Muppo, I’m doing better on periacton (antihist)as needed.
I’m also on Prothiaden 75mg
and propranolol.

yes so It seems I’m up to letter P in the group of meds. funny…


As sad as this conversation is, it makes me feel better I’m not the only one! I’m only 30 but am not afraid of death anymore either because for the first time, I will have relief!

I wish we could all cry and laugh together in person, but I guess we can on this board.

It really does help bring peace knowing you aren’t the only one. We aren’t the only ones suffering. We can suffer through this together. It’s hard and it brings tears to my eyes writing this, but we can prevail. We will!

Stay strong! We will prevail!

I had a friend over yesterday, it was planned 2 weeks ago as she has to drive 20 miles here (I never usually make plans with friends). I woke up feeling really dizzy, took painkiller and then stemetil, I really should have cancelled but didnt want to disappoint her. We went out for a pub meal and things were bearable for 3 hours, then I started to get dizzy and very cold and tired. Back at the house we had coffee in the garden and I was dizzy and freezing cold and fatigued. Total time of visit was 5 hours and it was too much for me. By the time she left, the shutters had come down, I could hardly walk in a straight line and was freezing cold and fatigued. I crawled up on the bed and just kept dozing off. I forced myself to stay awake as I wanted to sleep normally, but instead I had bad insomnia and was awake till half 2 in the morning, jittery and heart palpitations. This is the feeling when I think I am dying. I wonder how the body can keep going with all these abnormalities.

This is all the extra stuff that people dont realize when they think of migraine as just a headache. Yesterday was one of those sad days when you think “whats the point”.

I often hear on here, how some of you make plans to travel, stop off and visit people, travel again etc. I dont know how you do that. I can just about manage the travelling, then usually arrive exhausted at the other end and head for the bed for a few hours. Or is this the CFS part they reckon I have.

We have a holiday booked, I am due to travel to Zante in 12 days, I am panicking as I seem to have gone downhill. Car to the airport will be 2 hours then 3 and half to 4 hrs on plane.

Feeling a bit cheesed off.

Oh Christine , I do know how you feel, it’s so crappy to feel like we are too sick to be bothered hey?
Everything is so hard not knowing what may happen, I try to go with the flow, but always get caught out.
I think you may have been right, I’ve been feeling depressed lately.
Not sure if it’s med related or just perimeno that’s making life feel hard.
I had to get off the estrogen , it was making me sicker, it’s a shame as the estrogen did brighten up my mood.


Christine you will make it to Zante!

When I flew to Abu Dhabi 3 wks ago by myself I was terrified! I’d had a bad attack the Weds before and just didn’t know what to expect when I got to the airport.

I took 3mg Valium to try and keep things calm.

I made it. The flight actually made me feel better! When I landed I was still frigtened about getting through the rest of the airport drama before reaching my family.

I think because I knew my family were waiting for me, it gave me strength to get through it.

You will make it, rest when you get there and then enjoy relaxing in the sun and good food.

Sending you positive vibes for your trip.

Love Muppo x

I can’t help but think you need a different medication cocktail to help you. This sounds terrible, and I’m guessing the combo mav/cfs is a double whammy. I do know that the combo of 3 meds for me has made it so much better, and since December have had so much relief, that there are actually hours (never days) where I forget about MAV. I still deal with it every day…monitoring it…this morning Iwoke with the inner trembling…no idea why…but I haven’t had it in over a month, which was a blessing.
I know you don’t want to keep trialing meds, but I would love to see you get your life back…I remember those days of wondering what’s the point, and actually telling my husband that if this is my life now, I don’t want it. I had hope though, and things improved. That light at the end of the tunnel is so important (unless it’s a train heading at us! lol ) Is there any class of meds you haven’t tried? Or one that started well and got worse? every night before bed I’m readingabout brain chemistry/meds…trying to get a good education to help us figure this stuff out when doctors don’t always get it.
hang in there…

Christine - I was diagnosed with Chronic Fatigue 3 years ago and did everything I could to boost my immune system (still working on that) through monitoring foods/beverages/stress/supplements. My doctor also prescribed low dose compounded T3 thyroid for the fatigue which worked wonders for me. Now, after all these years I feel so much better after being diagnosed in December with migraine variant and starting on meds that treat that instead of the CFS. I really do not have much of my CFS anymore which makes me wonder if that really was the true problem (see Heal Your Headache by Dr. David Buchholz - misdiagnoses section).

Kelly is right about the correct medication ‘cocktail’. And, the best diet in the world really is the migraine diet because it screens foods that have highly irritating enzymes regardless of whether or not you notice them to be immediate triggers. I’ve noticed that some foods don’t make my migraine dizziness worse, they just make me tired (overdose of wheat and starches). I
wish I had that info. 3 years ago because I wouldn’t have been in and out of bed looking for answers.

Have a really good trip. Do everything for yourself that you can, and only DO WHAT YOU CAN! We really do need to know our limits. Even healthy, “normal” people do as well.
Gail : )

Well I have tried resting today, but the tinnitus is screaming at me and the left temple has been pins and needles for weeks.
Probably feel better if I can get a good nights sleep tonight, I seem to be jerking awake every time I try and nod off. The slightest noise affects me. Do any of you get that shut down exhaustion that I get? Go freezing cold and so so tired? I am still trying to work out which is MAV and which is CFS.

Jen, I got side effects from oestrogen and progesterone too. The plus side was the progesterone made me sleep like a baby and the heads were better and mood was great but it made me more dizzy. I try to go with the flow as well but the life we live is so restricted. I have a friend who has always had migraines but none of the other stuff we get. She doesnt stop, shes out and about all the time.

Muppo, thanks for the good vibes. I want to see places still but its always really hard, let alone if I get worse before I go. I got 70 mozzie bites in Spain and a 24 hr spinning vertigo attack which hadnt quite gone the day we flew home, in Menorca last year we had thousands of flying ants in the accommodation, they send in the cleaners who went mad spraying, that night I got the zig zag lines and then a 3 day migraine which I still had at the airport coming home! I am a good advert for foreign holidays arent I :lol: I envy you Muppo, seeing all those places, nothing can ever take that away from you. Did you travel to Abu Dhabi on your own this time as well?

Kelley, I am relying on you to sort out the way these meds work! The drs. dont, they just give you the next one to try. I suppose after over 20 of them I got sick of trying. I stuck Sanomigran for months, but the good effects at the beginning wore off and the sedation took over, Amy helped sleep but I had a hangover head every day and prothiaden worked then the effects wore off. I guess there is the doxepin to try and that timipramine one but that is supposed to be very sedative. I get far worse migraines on SSRIs so they are out, they wont give me verapamil for migraine now even though I tried it years ago but that made me dizzier, bad side effects from Epilem and dizzier from Flunarazine. I could go on! Maybe its the CFS part that gives me worse side effects with drugs. I do take Serc every day and stemetil helps from time to time. I will have to try one again when I get back from the holiday, I notice a lot of people get better on two meds at low dose, that may be more the way to go. My dr. wont let me do that, but I have accumulated several in the cupboard :twisted:

Thanks for the support guys, what would we do without this board.


Gail, I am very interested in the T3 you are taken low dose. Did you see an improvement from that? I have had antibodies to the thyroid for over 20 years but the TSH is always normal. Had private test done as well showing high Reverse T3. I have toyed with the idea of trying T3. I have the book “Heal your Headache” some good advice in there and I do stick to the diet most of the time, I do suffer with reactive hypoglycemia (diagnosed with GTT test at hospital).

That is really interesting that the meds for migraine have seen such an improvement, did you ever get that awful fatigue after shopping (going into a sweat and walking through treacle), or going really cold and exhausted? What meds are you on?
Is your fatigue helped now with the T3 or the migraine meds or both?


Hi Christine
I also answered your post by PM… yes, the migraine meds helped the fatigue a LOT. I’m really not sure why. I kinda blasted out of a rut somehow. I stopped taking my T3 thyroid meds for about 4 months because they were making me dizzy. I resumed them last week at the lowest dose and they are working great again… however, I’ve been taking topamax since December so that may be the major variable.

Re: jerking awake - that is very common in CFS/Fibro insomnia cases. The hypothalamus/pituitary/adrenal system becomes very disturbed among other body systems so deep sleep is heavily disrupted. Thus, pretty soon the “wired but tired” syndrome takes over … it becomes a vicious cycle. However, I doubt that MAV/migraine helps our sleep cycle much, either.

Re: progesterone - I used bio-identical progesterone for a couple of years only to find that it helped me sleep but also caused dizziness as well…
Gail : )