diamondcut

After trying so many drugs now to try and slow my heart rate down, nothing has worked with any real success. I have been prescribed what i would call heart specific like the beta blockers, Ivabradine, Clonidine and all that has happened is my BP drops slightly and the HR stays the same and i feel much worse.

I have been on vasoconsticting drugs like Octreotide, Midodrine i am still on and is ok, taken others like Pyridostigmine, Amitrtiptyline, mirtazapine all for good measure but no joy!

I have been told florinef is not a good idea for me due to being type diabetic and being a corticosteroid.

So my options are getting less and less here. Can anyone tell me please if they have had success in particular with their HR being lowered with EPO injections or Desmopressin or anything else in that category.

Many thanks

I would like to know the same thing because from getting out of bed until about 4-5 hours into the day even the Midodrine doesnt bring my BP up very well or slow my heart rate until my second doasage much later in the day.

Where i have been on so many drugs to specifically slow the heart with no success I am thinking would something like Caffeine help or hinder me.

I understand what you mean by chicken or the egg.

Can i ask has anybody with EDS gone onto HRT? Im just fearful (if i mange to live to my later years that is )

Have many women been ok with it?

Oh and another thing which could be relavent to this post, I could not go on any form of the pill as i had a very dangerous reaction when i was 18, right side of my body went numb and swelled up twice the size of my left. Is this due to the lovely EDS again. My GP at the time said try another brand but i just knew not to go there.

I also had a post with Issie and it seems we both had very early puberty i.e 9-12years old being fully formed and we began to talk about links with this EDS/Migraine etc etc. I wonder how many women on here with EDS had early puberty. I had an idea of maybe doing a poll?

I posted this on another site, but thought some could use this information. I was recently diagnosed with hypermobility possible EDS 3 and I've been in terrible pain lately. I always have pain, but it has intensified almost suddenly. From my education I remembered that estrogen helps to stimulate collagen and produce it. I had recently used a progesterone female insert cream to help stop severe menstrual bleeding. And it helped but did notice that my joints are in much more pain than usual; a significant amount more since using the cream. Anyhow I researched this idea that maybe the progesterone inhibited my estrogen causing more pain and found this article:

Medical: HORMONAL ASPECTS OF HYPERMOBILITY

August 5, 2009

Dr. Bird, a leading expert on hypermobility has written about the ‘Hormonal Aspects of Hypermobility.” As always, we will only be quoting excerpts from this article, even though it is now available online (see link below)

“Although oestrogen tends to stabilise collagen, progestogens loosen it. Many hypermobile patients, though not all, noticed a worsening in symptoms, more pain in the joints, clumsiness or a greater tendency to dislocate in the five days leading up to menstruation and in the few days after menstruation. This is exactly the time when the progesterone compounds far exceed the stabilising oestrogen compounds…. ”

Women who have increased pain during menstruation usually notice this after their period has become irregular which means that the estrogen/progesterone ratio may be off.

His suggestion?

Avoid progesterone only pills or “progesterone depo contraception preparations or … mechanical devices impregnated with progesterone.“ But he also points out that this is not a one size fits all answer. Some women cannot take estrogen contraceptives, in which case he suggests trying a different kind of progesterone. More importantly, you need to discuss the pluses and minuses of your contraceptive choices with your doctor. Handing your doctor a copy of Dr Bird’s article would be a good start. If you live in the UK, the article is part of theHypermobility Leaflet Pack.

And what about post-menopause when estrogen vanishes and the potential for pain increases? Will hormone therapy help in spite of the risks? “Since the oestrogen amount [during HRT] is very small…..[it] is often not enough to provide a protective effect for the joints.”

more here

Hi Maiysa

I am having problems trying to PM you.

Any ideas why?

x

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.

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?

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.

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:

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?

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"!!!

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!!!! 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????

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???

Hi Diamond,

I am so sorry you are having so much pain plus diabetes on top of everything. I share your difficulty with migraines as I have had the same issues as you for most of my life. Like you, I tried every drug imaginable. Recently, I changed doctors and discovered I was not having migraines. Instead, I have occipital and trigeminal neuralgia. I never understood why migraines were described as lasting 3-4 days in literature when my headaches could last for days, weeks, or sometimes months. I have finally found relief with nerve blocks. I also had my sub occipital ablated. My next step is to have the occipital nerve ablated by radio frequency. I think many of us with EDS hypermobility have headaches that are caused by neck/spine issues, but unfortunately there is not an easy answer out there for any of us - we are all unique on our journey

This form of treatment has helped me begin to address my other health issues such as EDS and POTS, because before I got rid of the symptoms from my headache, I could not do anything.

Please PM me if I can help in any way.

Take care,

Trish

That is EXACTLY whats happened to me, I always believed it was the POTS that would stop me ever returning to some type of job, now my headaches have taken over and exacerbated the situation. I believe i had POTS from early puberty and my decline this year is mainly due to the headaches. I never in a million years thought the pots would be on the back burner of things to fix.

Just one thing with with Dr Thomas, a few months ago I was told by his PA that he is not able to take any NHS patients at Bristol and if you want to see him privately he spells it out to you before you even book an appointment.

He can not prescribe any drugs himself, the drug in question for me at the time was octreotide. He says he can see you as a private patient but he will draw up an "action plan" to be sent to your GP. So you have to have an excellent GP who is willing to write out pre scriptions for things like Midodrine that are not licensed for POTS. Again i am so lucky with my GP becuase as his wife has Sebelium in London which is the only clinic in the UK that can legally dish it out for migraines. And his words to me were I can see the red tape that i can cut for you and help you here. My point is Dr Thomas can only adivce what you should take but your GP has to agree to pre scribe it to you.

I have to say that Prof Mathias is a very calm collective and caring consultant however the sytem he works in is not!! I have used all my savings i ONCE had to go privately, and still there have been mix ups between having notes moved from dr to dr. My advice and i realise its not always possible is if you can afford for even a private consultation, they are un rushed and the time between new drugs suggested can be weeks instead of months. I am lucky i was in a position with family and friends I could pay for my diagnosis becuase after 4 years the NHS had given up on me....

Trying to end on a positive yes i believe Mathias is worth every penny with his knowledge, experience and compassion.

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.

Thank you for the drug names there.

I was offered a form of nerve block but the downside was explained to me that it would only last 4-7 days. I guess if you are stuck in bed you would be grateful for that time with some relief. How long does you block injection last you out of interest?

Hi Diamond,

Aw, you have 4 schnauzers. You are so lucky. I told my husband I want to get mine a companion and he is not on board. As much as he loves Maddy, she is a handful, and he is over it. haha. Mine is what they call a salt and pepper party mix. (is this what yours are as well?) I guess they are a little rare. I had no idea when I got her. Since I'm home sick all the time, she has been my constant. IT's so nice.

No, I don't have diabetes and I feel terrible for you that you have that on top of everything else. Ah..this is very hard isn't it. But if you look up mast cell, just google mast cell activation disorder. Sometimes they put the worst symptoms up and it makes one think, I don't have that. Which is exactly what I thought for years, but I went and got tested and it might be the more difficult type. I was so surprised. I'm still in the middle of testing and being diagnosed. I can find some information if you would like. But there is a lot on google also. For me it causes flushing and itching and sometimes for the orthostatic intolerance to become worse. I take children's claritin because that's all I can take and it has helped. But with all of your issues, please ask your doctor about this first. But something you could look into is the antihistamine diet. There are several but I will find the one that is the diet most mast cell people use. I didn't realize I was eating a ton of histamine foods making me worse. Some people don't show an elevated tryptase level, but it doesn't meant they don't have it as there are other measures to diagnose mast cell activation disorder. There are also several types, so don't let that scare you. The worst ones are usually very rare. So you would want to look into the mast cell activation. But I showed a high tryptase level and still some doctors are not aware that they have changed the criteria and that it doesn't have to be high at all or even positive. But mine was I guess would be considered a positive. IT's a very simple blood test that you could ask your doc about. Tryptase.

Just a week or so ago I was diagnosed with hypermobility. So am also trying to find a doctor for that as they said it can be EDS 3. Or at least that's what others say. My sister also had sort of rubbery joints till she was 4, so I guess that makes it even more likely. But I don't know much about this disorder yet. Am still learning.

Okay, have a great day.

Maiysa

Thank you again for reply, yep i think i have more faithin Schnauzers than i do in Drs these days. The comfort they give me is better than any pill i have to say! It looks like her ears are clipped too. We are not allowed to that over here anymore or dock their tails....anyway we will get kicked off the boards for discussing dogs instead of pots i fear!!

I will have a read up on the mast cell condition, it could apply to me....

As for the hypermobilit, it makes me laugh becuase when you sit in front of the drs they say its not a desease "merely a condition"...Ok thats fine....but lets cut to the chace, once you are diagnosed as being hypermobile you can bet your backside nearly all those problems you suffered with be it nueropathic pain or joint pain or heartburn or headaches, its probably down to the good old EDS. This is what frustrates me that dr,s dont even know as a general rule how to do a simple movement test on patients that take 2 mins. The problems that can be understood of a patient who is hypermobile really do follow a pattern and hypermobility is just as important to be recognised as Pots. The dr will then go on to tell you a corny joke that "at least you wont age quickly" what an exchange hey!!!!hmmmm don think so some how....

Another quick question whilst i am trying to find out about Migraine in Pots folks,

It looks like in the next couple of months along side the bottox treatment I had recently they are thinking of putting me on Flunarizine. Just wondering if anyone has tried this and if it interfered with their pots management.

From what i know about it it can make you hungry, so for me if it speeds up my motility it could be beneficial.

I am treated for severe migraines. I was having 3-4 headaches per week and some of them lasted several days, so I was rarely headache free. I was also experiencing severe reflux, nausea, vomiting, diarrhea, and abdominal pain. We originally thought these symptoms were from the POTS. Since Oct. 2011, I have been being treated with Depakote as a profilactic treatment for the headaches (after trying other drugs that either didn't help or sent my POTS into a tailspin.) I now only have a mild migraine 1-2 times a week (and it really isn't bad at all and it usually is when the weather is changing.) This medicine also has stopped my GI symptoms I asked my POTS/migraine neuro about this at my last appt and he said that he thinks I am one of the rare adults that have abdominal migraine with headache. The only time I get GI symptoms now is when I have a headache and they are also very mild. A very nice pleasant change from spending nights on the bathroom floor in excruciating pain.

This sounds a bit like my case as in all the symptoms you can have just blur into one when you have something like POTS in the background. I have had bad flu viruses and not even realised how ill i am untill 2 days into it because I am just so use to feeling bad!! I am sure many know what i am talking about here!!

I dont know how many people have vertigo related migraine on here, but my advice to you is if your headaches are very frequent the sickness and nuasea maybe because your brain is trying to recover from the migraine thats passed even. The receptor nerves get all mixed up in the brain and this causes things like bablance, focusing and movement to become out of kilter, this makes you feel very sick. Initially Drs thought it could have been an inner ear issue but when migraine was confirmed i was given a VRT training plan. These are simple exercises like standing still with your eyes closed, looking at your left finger then right but moving your head and not your eyes. It kind retrains the brain to cope again. The Prof describbed it to me with an example of ice skatter, when they twirl around on the ice they have had to train their brains to cope with this becuase "normal" people would obviously be sickk and dizzy.

My problem is until i am on the right medication to stop the headaches, the exercises simply trigger another one and around in that big old circle you go!!

For those of you with severe migraines, please get tested for antiphospholipid syndrome, also called Hughes Syndrome after Professor Graham Hughes in London. It was the cause of my debilitating migraines which responded to blood thinners. Many people, however, respond to aspirin as low as 81 mg daily, so you might try that while waiting to get tested (simple blood tests).

I will look up the condition you mentioned here thank you. Sadly i cant take aspirin, Paracetamol fine but i am guessing the aspirin thins the blood and thats what makes me more dizzy on it.

Hi Diamondcut, welcome to the forum!

I'm on ocgtreotide too which works great on bp for me (and other things) but not on heartrate. I found a combo of octreotide and paxil works best for me. Paxil for me works great on heartrate. I had been on it for years and thought I could loose it when I started octreotide but it turned out I couldn't so I got on it again, started off on 10 mg which lowered hr but not enough so now I'm on 2 mg which works best for me.

Hope this helps! Take care,

Corina

Thank you for the advice, I will look up Paxil. Can i ask you in your case how long do you give a new drug if its for either BP or HR? If after a week or two you have managed to get to the dosage required and you are not seeing the numbers come down or go up as the case maybe, and all you feel is worse on the tablets how can drs say you need to give it 2 months??

Hi Maiysa

Guess what i have 4 schnauzers too!!! It looks like yours is salt and pepper, mine are all black and silver.

Thank you for the advice here. Can i ask are you a Diabetic is this whats caused the nueropathy? My trouble in getting a diagnosis when i am practically on deaths door was because i am insulin dependant diabetic since i was 11 so nearly every useless lazy dr blamed this with out any testing (i have spent thousands in last 2 years to find out myself because there was no help out there for me with the NHS), but it turned out not to be a diabetic issue but the Hypermobility that is to blame for all of it inlcuding the Pots.

Can i ask what mast cell is? I have seen it mentioned here a lot.

There is no doubt that the pots has contributed to the GI problems but the migraine this last 2 years has taken over and its caused terrible sickness and vertigo just by looking at a book or laptop. This time last month i could not have sat here and typed this, traveling even a mile up the road in a car is awful because of the motion. I have to travel to London for all my appointments and i usually have to go 2 days early to recover from the trip before i can see the Drs. Also have you heard of VRT (vestibular rehabilitation therapy) which for people with migraines vertigo are told to be done along side taking the daily pills?

Hello everyone.

I am new here and would like some advice please. The last 5 years my health drastically went down hill, it was gradual but the last 4 years have been **** and i have had to stop work, move back home and really lost a lot of independance.

This last year thank goodness i finally found Prof A and Prof M and to have a diagnosis of POTS was quite frankly a relief after some of the rubbish other Dr's had told me. Everything from anxiety to having an eating disorder!! Anyway the Pots and the Migraine are whats dominating my life at the moment. My daily migraines are not helped by the Pots but I have been told by an expert headache Dr that my EDS makes me wide open to this types of problems.

My question here, are there many people out there who have terrible Migraines that are almost taking over their lives with the pain and nausea? Nausea that at first we all believed to be a direct result from the Pots but as things have panned out its not the main factor.If so what has worked for you? I have just had bottox injected into my head and neck at the National Nuerology Hospital and wondered is there anyone else who has had this and how did you get on? Its only been less than 5 days for me so far so i am sore and bruised still.

On to my next problem, my very fast heart rate. Luckily my BP is well controlled on Midorine but I am having real trouble with meds that suit me for this problem.

I have tried beta blockers which were excellent for the first week, my heart rate that was 100-130 went down to the 80's range, but then i began to get chest pain and irregular heart beats just as i am about to fall asleep, not very nice.

Then it was Octreotide which did nothing for my heart rate or blood pressure, then Pyridostigamine, again not a single positive result to be see in test conditions and daily living. Then i was so so hopeful that Ivabradine could be my magic pill and all it did was give me a hitamine reaction that set my skin on fire with itching and not a drop in my heart rate!! I am also an insulin diabetic and my Prof thought that this could change the way the Octreotide worked due to the fact that my peptides are different, I dont know!! But now I am on clonidine and to be truthful its making me feel weaker when i stand for too long so i do not know how long i can continue with this pill really. I know you have to give these things a chance but i have read very same comments on here about it.

I know that everyone is different but you start to wonder when you dont get success if there is something out there left to try off the menu!!!