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

[diamondcut]

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!!!

[Maiysa]

HI Welcome to the site Diamondcut,

Sorry to hear of all your issues. I used to have POTS, but now have autonomic neuropathy and orthostatic intolerance, hypermobility and now mast cell. It's interesting that you mention headaches. It has now taken over my life and is now my worst symptom along with my neck in constant pain. I just bought the Driscoll Theory book Part 2 last night. Not sure if you've heard of Dr. Driscoll. But she has all three diseases as well and is a pioneer in this triad of diseases. Anyhow, I couldn't put the book down last night because I was fascinated by her theories as to why this is happening. Neck pain and headaches are what the first few chapters are about. Maybe you could find some answers and help in that book. And of course there are some amazing experts on here that know waaaaaaaaaaay more than I do. IT's a really great group. Also, I read that you are itching. I do that too and it's terrible. But I just tested positive for mast cell disorder which a lot of the others on here also have. Have you had that test? Thankfully to the people on here recognized it in me and they prompted me to get tested and they were right. I'm forever grateful to them also.

Okay, let me know if you have any questions. And welcome with a big hug. Wish we were meeting under different circumstances.

Maiysa

[Maiysa]

PS I forgot to mention I didn't do well on Clonidine. I developed a fever twice on it. So doc took me off. How is the botox working? I would love to have some right between my eyes. Sorry, it's not fun to laugh when you have a headache. I have headaches every day. And they are making me so frustrated and now the line in between my eyes is worse.

Also, for several years I couldn't stand up for longer than a few minutes. Mine ended up being my thyroid as a big part of the problem. Have you had your TSH levels checked also? And sometimes it's just the POTS. So sorry for you. Hang in there.

I also had to quit my job. But I'm still hopeful. It's been six years. But we can't give up hope.

[Katybug]

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.

[LMG]

I have POTS and terrible migraines too. Am trying an SSRI in hopes of it reducing the migraines. Can't say if it has helped yet. I also have neck pain now and had whiplash this summer so I finally decided to pursue that and just had an xray and an MRI. Don't have results yet.

I am considering botox or cortisone injection or trigger point injections or something. Now to find an MD who does all of that.

Please keep us posted if the botox works. Or how it impacts the POTS....I guess that would be my only fear. Hope it works!

[tachyfor50years]

1st of all, you are in the right place dear, I mean this forum, hope you will find some answers and some friends!

Regarding Botox, I had 15 ones of them in less than half an hour and since I am extremly sensitive to pain, I decided not to have them again until I die! The shots were like bee sting and worse!

It took exactly 32 days and then I noticed its effect but it helped me for 3 months; I had the migraines less in tension and less frequently.

Have you tried Relpax (Eletriptan) which might be under a different name in London? it is my life and my job saver! ! it works like magic for me, after I tried tens of other meds for more than 20 years!

Another thing that had helped me is magnesium glycinate which is good also for better sleep and preventing constipation.

Feel free to pm me if you want more details.

Take care.

[tachyfor50years]

Oh, regarding the Heart Rate, I have the same problem despite trying many types of meds. They are either not effective or I can't tolerate them and others have really bad side effects.

Trust me diamondcut, today, yes today, I was thinking of one of my friends in London (he is a plastic surgeon and a director of a hospital inside London), if I email him my medical reports so he can show them to a POTS Dr., just to see if they have a different treatment plan there for me!

[dsdmom]

Just a note on Botox. I tried it twice and both times it made me dramatically worse. I know I am in the minority so I truly hope that it ends up helping you! Daily migraines are no fun. Good luck!

[corina]

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

[Schorobi]

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).

[diamondcut]

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?

[diamondcut]

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??

[diamondcut]

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.

[diamondcut]

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!!

[Maiysa]

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

[Trach]

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

[corina]

Diamondcut, for me the Paxil needed 4 to 6 weeks to kick in and then another 4 to 6 weeks when I needed more. I didn't have any side effects from it which made it quite easy.

I had to measure bp and hr before starting the octreotide so I could see that it worked on bp at once (but didn;t need the figures to find out, I felt it within 2 or 3 minutes). At that time I was on paxil, bb's, mestinon and a few more. I (very slowly) weaned off of everything, just to find out that I couldn't do without the Paxil, so worked myself back on it. Octreotide and Paxil are my best working combo!

[Trach]

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.

[Katybug]

Diamond,

I have done the vestibular retraining exercises. Before my POTS dx, when the docs couldn't explain my dizziness, they sent me to a physical therapist who had me do these. They didn't help but they didn't hurt either. He and the ENT could not find anything wrong with my vestibular workings but did have equipment that he used to measure people's balance and mine was off every time. It is still a mystery as to whether the POTS or the migranes cause the balance issues. I personally (based on no science at all, just how my body feels) don't think they are separate issues. I think my inflammatory issues cause both my POTS and my migraines.

I hope you find some answers and feel better soon.

Katie

[Maiysa]

Trach I have occipital neuralgia also, I will PM you later to ask you more about your treatment if you don't mind. I'm on my way to physical therapy. NOt sure how it's going to work. I did have nerve block in the 90's and it made me sick for some reason for about three months. I couldn't take a drive in the car without throwing up. My doctors said that's really unusual. Maybe things have changes since the 90's. Anyhow, don't want to take over Diamonds thread. :0

Maiysa

[diamondcut]

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....

[diamondcut]

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?

[Trach]

The first round lasted around three weeks. I am on my 5th week so far on the second round. Regarding the sub occipital that was ablated, I had that procedure over a year ago and it is still working. So once the second occipital block wears off I plan on having the nerve ablated too. (I cannot begin to explain the overwhelming relief to wake up and not feel the " ice pick in my eye" pain I used to feel on a daily basis).

Maiysa - As I understand, there are different drugs that some docs prefer to uses for the blocks. Your experience sounds awful. Do you think it was an allergic reaction? Please feel free to PM me anytime. Although I have had nerve blocks by both a board certified pain management doc/anesthesiologist and by a neurologist who specializes in pain management, my daughter's pediatric neurologist (who I admire greatly) recommends only using a neurologist (preferably a headache specialist) for headache nerve blocks.

Trish

[issie]

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

[diamondcut]

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.