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diamondcut

Whats Next To Try For Heart Rate?plus Daily Migraines And Bottox!!

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Diamond,

I forgot to mention I opted for the nerve block instead of botox. My older daughter had tried botox a few years ago for her headaches and did not get any relief. I have discoved that most medicines and/or treatments work similarily on my two daughters and me. So I opted for the blocks instead of botox. The three of us had all had nerve blocks this year by different doctors. Other than being hospitalized for iv DHE with Toradol and iv nausea meds, the blocks are the only way for us to get rid of a headache.

Also, Migranol and Cambia help us sometimes. We also take Effexor for preventative.

I wonder if you can have the nerve block and botox???

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I wonder if you can have the nerve block and botox???

I dont' know that they would do them together. I started w/ nerve blocks and they did help somewhat but they do not last long ( a few weeks at best) so the idea is that botox would be a longer lasting measure. have you noticed a difference w/ the botox yet?

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There seems to be a trilogy with us with EDS/POTS and MCAS. It seems that so many of us have these three issues. I too have miagraines - sometimes with the pain and sometimes silent ones that mostly affect my eyes and cause nasuea.

Have any of you been checked for Chairi Syndrome with an MRI? Wondering if there could be that issue because of the EDS problem. I too just got Dr. Driscols book and am reading it - I think it's a good read so far - not too far along but, with EDS and all these other issues - I'm open to ideas.

Issie

Ahh there was another thing Dr Matharu said to me in the consultation, which i havnt told anyone yet, we were half way through, he was sat very professionally taking notes and I sat there with a friend listeing intently to him. The next minute because i was so sick from traveling and just that dread feeling that brings on a migraine before you see any Dr, I then blurted out "im sorry i am going to be sick"!!! :wacko:

There was then panic stations to get me a sick bowl and i was throwig up right in front of him. I tell you what guys if you want to make sure you come away with a drug then this is a sure way of making the drs realise you are ill!!!! :P Anyway back to point, Dr said becuase of the EDS there is a chance that the migraines are due to the fact that a type of fluid around the top of the spine can leak or bleed because of the brain sinking down through the day? The EDS makes the skin delicate therefore the leak can occur? Any thoughts????

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Diamond,

I forgot to mention I opted for the nerve block instead of botox. My older daughter had tried botox a few years ago for her headaches and did not get any relief. I have discoved that most medicines and/or treatments work similarily on my two daughters and me. So I opted for the blocks instead of botox. The three of us had all had nerve blocks this year by different doctors. Other than being hospitalized for iv DHE with Toradol and iv nausea meds, the blocks are the only way for us to get rid of a headache.

Also, Migranol and Cambia help us sometimes. We also take Effexor for preventative.

I wonder if you can have the nerve block and botox???

And i was told the nerve blocks only last 4-7 days. Are there different types then?

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There seems to be a trilogy with us with EDS/POTS and MCAS. It seems that so many of us have these three issues. I too have miagraines - sometimes with the pain and sometimes silent ones that mostly affect my eyes and cause nasuea.

Have any of you been checked for Chairi Syndrome with an MRI? Wondering if there could be that issue because of the EDS problem. I too just got Dr. Driscols book and am reading it - I think it's a good read so far - not too far along but, with EDS and all these other issues - I'm open to ideas.

Issie

There was then panic stations to get me a sick bowl and i was throwig up right in front of him.

Dr said becuase of the EDS there is a chance that the migraines are due to the fact that a type of fluid around the top of the spine can leak or bleed because of the brain sinking down through the day? The EDS makes the skin delicate therefore the leak can occur? Any thoughts????

I'm sorry you got sick, but glad it made him take you more seriously.

That is about what Dr. Driscol's book is talking about - a fluid around the brain and it pushing down on the top of the brain and causing issues.

Of course with Chairi - that is where the cerebral tonsils drop down into the cavity space and cause issues because of a drop and pinching that can occur. Two seperate things - but, both are possible with EDS.

There's so much that we have yet to learn about this and this is all a new part of study for me (so not well versed in it yet). It will be interesting to see what the doc does for you if this is an issue with you and the brain being pushed down from this pressure. I know Dr. Driscol is recommending a drug that helps all this to drain. But, not too far into the book yet - so don't totally understand her ideas yet.

Issie

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I wonder if you can have the nerve block and botox???

I dont' know that they would do them together. I started w/ nerve blocks and they did help somewhat but they do not last long ( a few weeks at best) so the idea is that botox would be a longer lasting measure. have you noticed a difference w/ the botox yet?

I am in a difficult position to comment on the botox at the moment. One reason your neck and shoulders will be sore and bruised from the injections alone for anyone thinking of trying it, so it would take about a week to feel the benefit. I then have been told i have to go cold turkey with the daily paracetamol, codeine and migraleave that i had no idea gives you rebound headaches. These are headaches that are made worse by quick fix drugs. I have been told advised to go cold turkey whilst the botox is at its peak and can help me get through the pain with the withdrawel. (I sound like an addict here but as i am sure many of you know we dont take codeine because we enjoy it, its horrible stuff that makes you sick and constipated lol)

Then when i go back in 8 weeks time and my system is clean if you like i can start on a triptan drug. I have been adviced that once you start a preventative drug like Flunarizine you can only take quick fix pain killers a few time a month else it cancels out any benefit you want to see with being on the Triptans. So i can let you all know in the next few weeks if i feel the Botox has helped.

Maybe i should just get checked into the Betty Ford clinic hey??? :lol: :lol:

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I have to get this Dr Driscolls book as a few people have now mentioned it.book just to have a read. I am sure there are pieces of the puzzle. Another thing Issie in my medical notes they commented on having a high pallat inside of my mouth. I remember thinking what the heck has that got to do with anything, but i think it must be an EDS trait or dare i say deformity lol!!! I would be interested to see how many of us have it.

Also I dont know if there is a link here but i had very early puberty, i had boobs at 9 periods at 10, then Diabetes at 11. I wonder how many POTS females on here had early puberty.

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I have to get this Dr Driscolls book as a few people have now mentioned it.book just to have a read. I am sure there are pieces of the puzzle. Another thing Issie in my medical notes they commented on having a high pallat inside of my mouth. I remember thinking what the heck has that got to do with anything, but i think it must be an EDS trait or dare i say deformity lol!!! I would be interested to see how many of us have it.

Also I dont know if there is a link here but i had very early puberty, i had boobs at 9 periods at 10, then Diabetes at 11. I wonder how many POTS females on here had early puberty.

Yeah, an EDS trait. And yes, matured fast - completely mature by age 12 - around same time as you for periods. Thank goodness, I didn't get the diabetes :( sorry for you on that one. I was however, very - very hypoglycemic at that age - even younger. What significance do you think this has with us?

Issie

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Mmmmmm (As i scratch my chin and try and put on a thinking face....this hurts....lol) Well they are always talking about Estrogens in the human body being to high now a days. Do people with EDS not react to these estrogens in a way not EDS people do.

EDS is a female condition largely so it has to be something to do with hormones we have that males dont. Does the early puberty have such a chaotic effect on the EDS body becuase everything is changing, growing and forming so fast?

I have just asked my mum "what is the reason god would create 10% of the human population to be hypermobile?"

There must be a reason, is it becuase it allowed us to swing from the trees becuase we were flexible lol? Did it allow us to run and hunt faster? I could be sooooo way off here but its thought provoking....There must have been an advntage to being hypermobile going way back...

Could you do a poll on how fast and what age did EDS Pots patients have puberty?

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I don't think it's that - but, I'm sure all people are exposed to way too much estrogen. There are males that have EDS too - so not sure about the idea of it being mostly female. But, males are exposed to estrogens way more then they should be in the environment and foods.

One idea of interest, is many people with mast cell issues had or have endometorisis - which is also related to estrogens. There is a new thought that endometroiol lesions could be mast cells. So, there might be a connection within the triology that is going on with EDS/POTS/MCAS.

God didn't create us imperfect. Man caused the imperfection because of the sin of Adam and Eve (man's first parents from which all other imperfect people came from). So, we weren't created with these imperfections, we inherited them. You can't produce something perfect from something imperfect.

Issie

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That is more like it, trust the human race to mess with things!

There is certainly some topics we touch on that clearly have some sort of link, I was told by Prof Mathias it is the mothers gene who carries forward the EDS, my mother is flexible, my nan even more so and I have read somewhere for every 5 women who have Pots only 1 male does, how true this is i guess the scientist/academics have the figures.

What would your take be on it?

What i think is true is that places like this are just as important to understand the mechanics of POTS than any University Hospital at times.

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Yes, my EDS is from my mother's side of the family too. I have questioned many times, and even of guys, if there is dysfunction in hormone levels. I do believe there is some sort of connection. I'm just not sure it's been explored very thoroughly or been figured out the connections .. .. yet. Maybe, there is an estrogen dominance problem and/or too low levels of either testerone or progesterone. With endometriosis - it is thought to be an estrogen dominance problem.

I think us on the forum research a whole lot to try to find answers. Doctors have their field of expertise - but, can't possibly get into all the complicated things that our SYNDROME brings to the table. Since it is so complex, there are so many different directions that we have to look at and/or rule out. We need to be up on what we're dealing with or some really important piece of the puzzle may be missed.

Issie

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Another migraine day for me today. UGH. I can't take triptans as that is what caused POTS for me last year.

i finally got a referral from endo and PCP to a neurologist in town (can't get to headache clinic out of town, too sick to travel now).

Diamondcut or anyone- how is the botox working out? Can it make POTS worse? That's my big fear.

I have a list to discuss- beta blockers (but would have to be low dose), pamelor ( a tricyclic), botox and maybe the nerve block. Any input from anyone would be welcome. OTC stuff doesn't help, can't tolerate advil. The headaches are getting to me.

Thanks,

Lauren

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Hello Lauren

I am so sorry you are not doing good at the moment. The biggest thing that i was told with my headache specialist was the more daily fix tablets you take, the more you increase the rebound headaches, all that happens is you become dependent on them. You then get diagnosed as "over using" daily OTC medicines, then the headaches just escalate and its a horrible viscous circle you get trapped in. I did go cold turkey with the Codeine and paracetamol and it was **** for the first week, but recently where i have eased off the so called quick fix drugs, the headaches have become less frequent. But i need to go on a preventative daily med still. This is another thing if you take daily OTC meds, they will actually stop something like a Tricyclic or Sebelium (calcium channel blocker) from doing anything. I was told that i may aswell stop taking my Amitriptyline as its as good as useless!!!

The Botox has most definitely half eased the pain and not interfered with my pots what so ever so i would recommend it. It has helped me quite a bit

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Diamondcut- So glad the botox helped you!!! How long did it take to see results? Did it cut back on frequency?

I am a bit scared but may give it a go....I could try the tricyclic or cal. channel first but not sure.Just don't want to make POTs worse.

I don't take anything for the migraines as OtC doesn't help and the prescription stuff makes me sick. Sensitive to meds....like most everyone else on the board.

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Diamondcut- So glad the botox helped you!!! How long did it take to see results? Did it cut back on frequency?

I am a bit scared but may give it a go....I could try the tricyclic or cal. channel first but not sure.Just don't want to make POTs worse.

I don't take anything for the migraines as OtC doesn't help and the prescription stuff makes me sick. Sensitive to meds....like most everyone else on the board.

If you are sensitive to meds i say go for the Botox, because there is only 3% chance of a reaction - pretty low.

It most definately stopped the pain for about 5 weeks, it is slowly creeping back but the nausea and visual disturbances are most certainly going on, and the sickness and vertigo is effecting me each day still. I will most definately need to go on another daily med to quash these problems...

Will keep you up dated as i am starting a new migraine drug after my next appointment in 1 and half weeks time.

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