Charlotte1

LMG - My chronic low blood pressure has been raised which I've attributed that to the florinef but perhaps mestinon is playing a role there. As for heart rate, DIY tilt test shows I rarely reach an increase of 30 bpm upon standing anymore which I definitely attribute to the Mestinon. i didn't start to feel better until being on Mestinon for a few weeks despite being on florinef 4 months prior. I was told Mestinon works as a messenger between the brain and the nervous system so perhaps the reason for feeling better is b/c of what Ramakentesh said, it boosts the parasympathetic activity. But I'm not so sure its working on vasoconstriction for me and am thinking Midodrine might help for that.

Anybody using Midodrine on a 'as needed basis'? Dosage?

I've had so much relief with my POTs symptoms once Mestinon was added to my regimen in February. (180mg Slow Release 1x/day). I'm also taking .1 florinef @ morning and 50 mg lyrica morning and night as a pain prophylactic and domperidone for bowel motility issues.

I'm usually symptom free first thing in the morning but for some reason after about 45 min of being up and around in the house,I start to feel the heaviness in my legs, soon followed by brain fog. I don't know if this is from blood pooling or something else going on but my 'magic' compression socks aren't helping anymore and I'm not sure how helpful the florinef/salt/H20 is anymore either.

.After reading posts on how ativan has helped some pts symptoms, I've started taking .5 mg 3x day and its been very helpful at keeping both my energy level up and my brain fog down . I don't understand how that can be since ativan (lorazapam) its basically a tranquilizer! Shouldn't I have less energy? Anyway, without it, my legs begin to weaken and I'll get a full out crash (incoherent speech/fullness in head/cannot think/focus if I don't lie down within minutes of those first symptoms. So although the Mestinon has helped, its only been to a certain point. I will definitely stay on the Mestinon but if possible, I would like to replace the ativan with something else.

Giraffe - I see you take mitodrine. If I take Mestinon daily, can midodrine be added PRN? What is your doseage and how often, if I can ask u that? Perhaps the vasoconstriction (lack of) is not being addressed properly and that's my issue?. Florinef raised my blood pressure but I didn't FEEL much different on it. Midodrine daily has to be better than taking benzos daily, right (I'm not anxious but they work anyway somehow???!)

Thanks!

@LMG and AllAboutPeace and anyone else interested in the bed wedge- I'm back to report of my findings with the wedge.

Definitely, having my head elevated allows me to wake up without a headache! I know that for sure now! But, as was posted, the wedge is not comfortable, or at least the one I had purchased (they also had memory foam wedges but I wouldn't be able to return those) I had a hard time staying on it all night so then I tried using it only at the start of the night and tossed it when too uncomfortable, but got a morning headache those times. Then I began using it the times I had awoke to pee in the early morning. Because I was still tired, I was able to fall back asleep and did not wake up to a headache! But since I don't wake to pee every night, the headache relief was inconsistent - I prefer to sleep through the night if possible rather than setting an alarm to set up the wedge.

In the past, propping up my head and shoulders with bed pillows has been bad for me, for causing pain in the neck and shoulders and sometimes even caused a headache. I thought though that I'd give it another chance. So for a few nights I did that. Results were inconsistent. Sometimes headache, sometimes not but always neck/shoulder pain so that is out for me.

Yesterday we raised the head of the bed 6" again to see if that will help,although I always slip down the bed scrunching up the skin on my back - hurts my spine. My husband doesn't see how I can be slipping but I feel it..even if its minutely, my loose ligaments don't like it. Last nightI had taken extra meds to fight a migraine so waking up without a headache this morning may be more b/c of the Maxalt than the bed being raised. I'll try that a bit longer.

I totally understand the dilemma of the Princess and the Pea!"

To be fair in giving you the results of the 'test', it has to be mentioned that I have issues with a thoracic scoliosis, and both cervical spine and SI joint instability, I didn't sleep well with the wedge but if you don't have those issues, it could work for those that feel that the daily morning headaches and unwell feeling are due to blood flow. You will have to see if you find it too uncomfortable. The health store I was at offered various sizes and comfort fabrics. I chose the smallest incline (7 ") and kept the bag on it so that it could be returned. It cost about $70.00

Laying in a reclined positon helps with my chronic nasal congestion as well. As for the pain, I'm hoping my Lyrica will kick in soon and help my pain issues.

Wishing the best to you all in your efforts to gain better health.

Charlotte

Like clock work, the headache happened again this morning so I raised my head onto 2 pillows and within 5 min., headache gone! (isn't that weird?) I was too tired/lazy to reach for the ice pak and quickly fell back asleep. Bad move... I woke with a kink in my neck (unstable cervical vertebrae) and a different kind of headache was now starting, from my neck/traps area. Used the ice pak for 10 min. and then rubbed some Voltaren on and popped 2 ibuprofin. Thank God, that did it and i didn't have a migraine today. Honestly, my life is full of migraines so this newest morning routine has been a sanity saver so far. It likely won't work every ime, but if I take care of the pain with these measures, IN TIME, it usually helps me get through at least 1/2 the day headache free, longer if I'm real fortunate.!

I didn't get out for to look at the wedges yet but if I do buy one, I'll report back on how its working out for me. I'm hoping the angle won't have me too high.

@ LMG - I also have been wondering about sleeping reclined, rather than flat. Since POTS, I wake up most mornings around 6 am with a headache at the base of my skull..I now keep a cooler with a gel pak in it at my bedside. When I wake up to pain, I lay the cold gel pak on my pillow and then position my head onto it. It dulls the pain most times before a migraine has the chance to develop. I've also noticed that by simply sitting up into a reclined position (slowly) against some piles of pillows, usually the headache will go away. So like you, I also think there is a blood flow issue involved. Lying against the pillows can be uncomfortable so I will be purchasing a bed wedge to allow me to sleep in a reclined position with the hope of stopping the 6am wake up call!

I've thought of taking a night dose of florinef but have been told it would keep me awake so be careful about doing that..

@Relax86... I love your honesty!! Thanks for that!

Thanks everyone. I am quite nervous about the cymbalta, after reading so many negative things. The lyrica is an anti-convulsant (like Topomax) so likely that's what I'll go with. Seems to be good results with it.

LMG- Usually,but not always, Maxalt works within 90 min.in my case for relieving migraine pain. It's a dissolvable wafer that is placed on the tongue. It's handy b/c it can be used even if water is not nearby. You might have success with that (since you said nothing stops your migraines once they come on).

Unfortunately, I use too many Maxalts b/c my migraines are so frequent. That's why I'm searching for a preventative.

I have been told by my pharmacist and primary doctor that I am taking too many migraine abortives ( (12- 14/ Maxalt/mth) and must start a prophylactic. Beta blockers are not possible b/c I have low blood pressure and am bradycardic at night.

Lyrica and Cymbalta are 2 meds that have been suggested but b/c I often react to drugs so strongly (don't we all on this forum?), I'd first like to hear some testimonials. Can anyone tell me about their success/failures with prophylactic migraine medicine, especially if the migraine/headaches are related to POTS.

I need help. Thanks...

I have been told by my pharmacist and primary doctor that I am taking too many migraine abortives ( (12- 14/ Maxalt/mth) and must start a prophylactic. Beta blockers are not possible b/c I have low blood pressure and am bradycardic at night.

Lyrica and Cymbalta are 2 meds that have been suggested but b/c I often react to drugs so strongly (don't we all on this forum?), I'd first like to hear some testimonials. Can anyone tell me about their success/failures with prophylactic migraine medicine, especially if the migraine/headaches are related to POTS.

I need help. Thanks...

Badhbt - absolutely terrifying...for the entire family. Seriously, I thought I might go insane as there didn't seem to be any 'medical' reason for it. I wouldn't wish that time period on my worst enemy! Glad that part of the 'illness' is not experienced nearly as much anmore by either of us.

Hi, I see that the original post was last March, 2012. I'm a newbie and just wondering how lemonsin2lemonade is doing now? So happy to hear that the 'push through it' has worked! Problem is that there are many posts/articles that say graduated exercise and/or not 'listening' to your body is going to make things worse. Now I'm confused as to what to do re: my recent diagnosis of POTS. I'm very symptomatic and certainly don't want things to get worse by pushing through/ ignoring warning signs yet I don't like this life of being a couch potatoe / home bound person either.

Hi Tobiano, I responded to much of this in your other thread named 'neuroloigical symptoms". I'm often have amnesia after a collapsing episode and although I might appear like i've fainted, I usually have not but am just not able to respond with head movements or speech. So weird as I want to answer, I just can't!

I experienced bizarre neurological symptoms in June 2012. The neurological symtpoms were terrifying as i did not know why they were happening. Episodes of slurred speech, collapses with not being able to respond verbally afterward, strange sensations in my head, amnesia at times, and Parkinsonian-type walking. Basically, it looked like I was always drunk. By October the severity of the neurological symtoms subsided and the cardiac like issues started to appear. Perhaps they only subsided b/c I learned by then that staying put on the couch could ward off symptoms. Even now, if I do too much either mentally or physically (I'm housebound now) such as type too much or try to play Scrabble or walk more than in the house, the weird symptoms will re-appear.

Lots of tests were done to rule out disorders with similar symtoms but MRI and other tests showed nothing abnormal. In November after another pre-syncope episode (I have also fainted a few times) ,I was admitted to a neuroloigcal unit for 2 nights and then transferred to an epilepsy unit where 5 days of 24 hr. EEG showed that i did not have seizures. Since they didn't know what was going on, they labelled me as having 'pseudo seizures' and suggested I seek therapy! Thank God I had recently started seeing an endocrinologist who knew about POTS and arranged for ttt'ing. POTS was confirmed early January 2013.

I did not have the body tremors you speak of but did and often still do have times of jaw clenching as well as other involuntarily muscle contractions, especially the traps.

Hi Abbyw, - I'm a newbie too. Like you I feel best when my resting HR is in the 70's.

However, I don't seem to fit the usual POTS category as a 48 holter recording showed I was bradycardic almost 2/3 rds of the time with night pulse going down to 38bpm. My DAY HR lying down averages 50's-60's, sitting averages are in the 70's and standing can be anywhere from 80's to 130 within one minute. I have very low blood pressure as well but FLORINEF has helped normalize that.