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POTS/Dysautonomia Support Group


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  • 1 year later...

No one has posted on this thread for a long time. But I am experiencing POTS symptoms again and was wondering how others with POTS are coping. I have had POTS symptoms on and off for several years after my first withdrawal. I did not have these symptoms before taking Lorazepam.

I have not been officially diagnosed, but my functional med doc thinks I have it due to withdrawal. I am going to a cardiologist on Monday for PVCs and probably a moniter.

I work outside and it is really hot where I live this summer, so the symptoms always get triggered when I am outside in the sun--I drink at least a gallon of water and also some with electrolytes every day. I get the chest tightness/pressure and the fatigue. Today I had some spacey feeling--not quite dizziness, but close. The PVCs are better today since I have limited my time outside. My sleep is disrupted several times each night due to high cortisol. I truly believe my POTS is adrenal driven (HPA axis dysfunction driven)--too much cortisol and adrenaline causing dysautonomia.

I really do not want to take a beta blocker--my heart rate is a lot better than it was. Over the winter it was constantly in the 90s. Now it is usually in the low 70s. Now it goes up when I stand up after lying down or sitting--typical POTS. I have been taking a supplement for the high cortisol, meditating, doing adrenal breathing, fixed my leaky gut, I eat really healthy food, walk every day, and I am working on carving away more stressful situations from my life. One big one should go away in a few weeks and it will be a relief!

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  • 4 weeks later...
OMG! So there is another soul out there with POTS and PVCS!  I'm on beta blocker and antiarrhythmics and still suffering. Life is hell. NOTHING is worse in this hell than heart issues. If you reply, we will cling together.
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Ladybug--oh, yes! I hear you--nothing is worse than the heart symptoms. If that would go away, I could sail through this mess.

I do think I have finally found the reason for me-- I have sleep apnea. I think it has been brought on by Lorazepam use and withdrawal. I stop breathing 20+ times an hour on average (at the sleep test). This causes repeated fight or flight episodes and causes cortisol and adrenaline to surge. I know that causes heart arrhythmia. The ER doc gave me a beta blocker last fall when I had a bad POTS flareup and the tachycardia and PVCs would not calm down. I took them for 2 days and then I have not taken any since.

I have POTS symptoms too although it has calmed down in cooler weather. My heart rate has calmed down except for at night when I stop breathing with the sleep apnea.The PVCs have calmed way down--I get a few every now and then. Some foods seem to trigger them for me. I still have really low blood pressure, but have not fainted because of it. I don't get dizzy either.

I am going to get a treadmill test and echocardiogram on Monday and wear a Holter monitor again for 24 hours. This will be the third time in 6 years that I will wear a Holter monitor--all because of benzo withdrawal. It is just crazy.

How are you sleeping? Do you have sleep apnea symptoms? It can cause heart issues--there are some good websites on sleep apnea and POTS-they often go together. Might be worth it to get checked out. It brought me a lot of relief to know it is something that can be fixed with a mouth guard or APAP or CPAP machine. And it might just be a temporary condition brought on by benzo withdrawal. Who knows?

Hang in there--I know the hell you are in with the heart issues. It is the absolutely worst symptom for me.  :smitten:

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  • 1 month later...

Hi Blue moon

So sorry I haven't responded for so long. I didn't know how to see responses to my posts. Just worked it out. Dah...

Gosh, you are suffering and so far out! That's depressing, I sympathise. I read your profile and can't believe you are still sick after only a sporadic use. That sucks!

I am feeling slightly better right now at 6 months. (After a horror 6 week wave at 5 months.) Don't know if this is a window or am I actually getting better. It's has never been clearly defined with me, windows and waves. I have tried to reduce my heart arrythmia meds 3 times now with disastrous results. Scared to try again. I still feel the pvcs even though the meds are preventing them. So weird. Im also on beta blockers and stopping them also brings back the pvcs. What a nightmare! I guess I have to wait longer for my system to settle. I never had pvcs before benzos. They started shortly after I took benzos but I never made the connection and in fact the doc kept giving me more to ease ectopics. I wish for a miracle. The pots i think I had all my life at a sub acute level. Never paid it much attention, just thought it was part of my makeup. I always had low BP and HR. But during taper the pots went wild and I could not stand up for months. Now if I take the drugs it's OK most of the time. I don't think I have sleep apnea. At least not to my knowledge. My sleep is patchy at best but that's benzo WD... I do notice that when the pots are up they irritate the heart (I guess via adrenaline ) and then the pvcs kick in big time. Im so tired. I have spent 9 years fighting them. My only hope is that they will go away after BW is over. Although there are thousands out there suffering with pvcs and never touched a benzo...

To make matters worse I am beginning menapause and hormones are all over the place. When my eastrogen is down, everything is so much worse. Us women have a much tougher I think. Don't know how old you are but I hope at least that is not your problem. PM me if you like and we can support each other. Hugs

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  • 3 weeks later...

Hi Blue moon

So sorry I haven't responded for so long. I didn't know how to see responses to my posts. Just worked it out. Dah...

Gosh, you are suffering and so far out! That's depressing, I sympathise. I read your profile and can't believe you are still sick after only a sporadic use. That sucks!

I am feeling slightly better right now at 6 months. (After a horror 6 week wave at 5 months.) Don't know if this is a window or am I actually getting better. It's has never been clearly defined with me, windows and waves. I have tried to reduce my heart arrythmia meds 3 times now with disastrous results. Scared to try again. I still feel the pvcs even though the meds are preventing them. So weird. Im also on beta blockers and stopping them also brings back the pvcs. What a nightmare! I guess I have to wait longer for my system to settle. I never had pvcs before benzos. They started shortly after I took benzos but I never made the connection and in fact the doc kept giving me more to ease ectopics. I wish for a miracle. The pots i think I had all my life at a sub acute level. Never paid it much attention, just thought it was part of my makeup. I always had low BP and HR. But during taper the pots went wild and I could not stand up for months. Now if I take the drugs it's OK most of the time. I don't think I have sleep apnea. At least not to my knowledge. My sleep is patchy at best but that's benzo WD... I do notice that when the pots are up they irritate the heart (I guess via adrenaline ) and then the pvcs kick in big time. Im so tired. I have spent 9 years fighting them. My only hope is that they will go away after BW is over. Although there are thousands out there suffering with pvcs and never touched a benzo...

To make matters worse I am beginning menapause and hormones are all over the place. When my eastrogen is down, everything is so much worse. Us women have a much tougher I think. Don't know how old you are but I hope at least that is not your problem. PM me if you like and we can support each other. Hugs

Sorry it has taken me so long to reply. We are getting ready to move and it is crazy right now.

PVCs started for me last November--I think benzo withdrawal made my central nervous system very sensitive and it contributed to causing PVCs. My POTS symptoms are pretty much cleared up. But when I eat too many carbs at once, it triggers PVCs. I also suspect that I have some food sensitivities and when I eat certain foods, it triggers PVCs.

I am also heading towards menopause and I think hormonal fluctuations also contribute to PVCs. I suppose I should be grateful that I don't have to take any medications for the PVCs--I seem to be able to control them by what I eat. My central nervous system is still really sensitive--I have a very low tolerance for stress still.

I am hoping that once I get my mouth guard and I get my sleep apnea under control, that my central nervous system will calm down too.

Will try to PM you--but it may not be for a few weeks. This move is stressing me out but things will be much better in the long run--peace and quiet at our new house!

I hope you are doing better!

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  • 1 year later...

Hey all-

 

I reported back in 2015 that my pots disappeared. Well, it has come back a couple weeks ago. :(

 

I am coming up on 6 years off benzos...

 

I did drink 1-2 drinks 3-4 days a week (alcohol). Not sure if that contributed to anything.

 

When I quit drinking about a month ago I also drastically changed my diet and started exercising. That is when my pots came back. Sicker than ever now. I cant get my bp down when I stand..it spikes from 100/60 to 150/100 just from standing...my chest hurts a lot and I cannot walk much.

 

Hoping for remission again and if anyone has any tips or ideas on how I got ill again please let me know.  :sick:

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Following this...although I am healed ( for the most part anyway...I submitted my Success Story several months ago, but still hover around 98%...I figure Benzo just got away with that other 2% and it's the ransom for getting out)

  I also started having pvcs, and up and down Pots....I had it in acute about 4 years ago and it straightened itself out....now 4 years later it's back ?...wth ? I am waiting for the Holter monitor and taking about 10 mg ( split) of atenolol. The atenolol is helping, but when it leaves my body I get a flood of cortisol and jitters for a few hours ( just like when I took it b4). I had about 3 days of wild fear and anxiety and the moment I would get hit I would get caught with the '2end' fear and it would get worse. I sort of have a grip on it now and they have become less frequent , but  have that old familiar fear ( damn it !!!) , of not wanting to get out of the bed where I don get them....is there absolutely no end to this ?....Revenge of the Benzo ?....

    Hope this let's go of us....we have paid our damn dues.

                  coop

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Hi Coop...Be sure that the crazy thing that happens is not HH..I have one and my heartbeat is crazy at times... The vagus nerve gets irritated by it then sends out to the brain heart kidney's ect ...it basically sends out signals to all the organs ...sometimes the HH presses up and can cause us to over breathe cough as well as having fast heartbeat and palpitations ...Just thought I'd mention this ...I am in a support group for HH... They all have these symptoms.                                                                                                                                      Tass.
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https://en.m.wikipedia.org/wiki/Postural_orthostatic_tachycardia_syndrome

 

Postural orthostatic tachycardia syndrome

Not to be confused with Pott's Disease.

Postural orthostatic tachycardia syndrome (POTS) is a condition in which a change from lying to standing causes an abnormally large increase in heart rate.[1] This occurs with symptoms that may include lightheadedness, trouble thinking, blurry vision, or weakness.[1] Other commonly associated conditions include irritable bowel syndrome, insomnia, chronic headaches, Ehlers-Danlos syndrome, fibromyalgia.[1]

 

Postural orthostatic tachycardia syndrome

Synonyms

Postural tachycardia syndrome (POTs)

Specialty

Cardiology

Symptoms

With standing: lightheadedness, trouble thinking, blurry vision, weakness[1]

Usual onset

Around age 20[1]

Duration

> 6 months[2]

Causes

Unknown[2]

Risk factors

Family history[1]

Diagnostic method

An increase in heart rate by 30 beats/min with standing[1]

Differential diagnosis

Prolonged bedrest, dehydration, hyperthyroidism, anemia, certain medications[2]

Treatment

Avoiding factors that bring on symptoms, increasing dietary salt and water, compression stockings, exercise, cognitive behavioral therapy, medications[1]

Medication

Beta blockers, pyridostigmine, midodrine, and fludrocortisone.[1]

Prognosis

~90% improve with treatment[3]

Frequency

~ 2 million (US)[2]

The cause of POTS is poorly understood.[2] Often it begins after a viral infection, surgery, or pregnancy.[3] Risk factors include a family history of the condition.[1] Diagnosis in adults is based on an increase in heart rate of more than 30 beats per minute within ten minutes of standing up which is accompanied by symptoms.[1][2] Low blood pressure with standing, however, does not occur.[2] Other conditions which can cause similar symptoms, such as prolonged bedrest, dehydration, hyperthyroidism, anemia, and certain medications, must not be present.[2]

 

Treatment may include avoiding factors that bring on symptoms, increasing dietary salt and water, compression stockings, exercise, cognitive behavioral therapy, and medications.[1] Medications used may include beta blockers, pyridostigmine, midodrine, or fludrocortisone.[1] More than 50% of people whose condition was triggered by a viral infection get better within five years.[3] About 90% improve with treatment.[3] It is estimated that 0.5 to 3 million people are affected in the United States.[2] The average age of onset is 20 years old and it occurs more often in females.[1]

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Thanks Tass..!...good call...I do have a hiatal hernia and my physician just ordered another swallow test/x-ray to see if it's esophogeal spasms....thank you so much for sharing your HH sx .....helps me not jump off the cliff with this. I also get palps when I bend over and/or lift something like a roaster pan full of chicken/veggies.....crazy isn't it ?
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Azalea....wow....thank you for all that great info....very reassuring. Amazing how we learn so much from each other while our physicians sometimes practically just brush it off

 

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Azalea....wow....thank you for all that great info....very reassuring. Amazing how we learn so much from each other while our physicians sometimes practically just brush it off

 

Thank you for the acceptance and I thank you for these efforts- thank God and thanks to us all.

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Hi Coop...Not sure how you get the link from there ..I tried once for another and couldn't do it..never have done it before .The group is Hiatal Hernia support group...There is a few groups ..One has a cover photo of butterfly's. Will have another go at trying to get the link ..If not though just type that in...There is so many with seemingly heart problems or think they have heart problems but there heart is fine ...they have had all tests ...many end up in ER but are told all is good with their heart.... HH Is the great Mimmick  of so many things they say ...a lot due to the Vagus Nerve being irritated... I am one of them.                                                            Tass
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  • 8 months later...
Is anybody still around on this group? Just wondering how you are all doing and if you’ve found anything that helps? I’m getting slammed hard with POTS symptoms last part of my taper (1 mg left) and practically bedridden last 6 weeks. I hope it gets better  :'(
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  • 2 weeks later...
I have POTS and prandial hypotension. Anyone have this? I am 13 months post jump. I have had the prandial hypotension for 1 year. Thank you.
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Electrolite drinks help POTS symptoms in some people. Also make sure you are always well hydrated. Just giving feedback I was given by doctors so far.
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Ive had POTS and Raynauds like symptoms since my teens, never officially diagnosed with either, went on Toprol and Procardia and symptoms basically gone. Had to stop procardia after recent failed taper because it caused my heart rate to skyrocket, also got my toprol upped
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  • 3 months later...
  • 1 year later...

Anyone still active in this group? I've been having issues with POTS since my first taper attempt and it's what led me to reinstating. I have many questions and could really use some support as my posts in the withdrawal section always go unanswered

 

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Anyone still active in this group? I've been having issues with POTS since my first taper attempt and it's what led me to reinstating. I have many questions and could really use some support as my posts in the withdrawal section always go unanswered

Hi dmw,

I had and still have some lingering pots symptoms. Last summer was really bad. I couldn't breathe and I had air hunger. Low BP, chest pressure.. Blood pooling to my feet. Also had re active tachycardia when going from sitting to standing.

This all happened after a bunch of cuts caught up to me. I suffered badly. The only thing that helped was to hold. Stop tapering. I did that and I gradually got better over a few months.

I recommend not tapering and hold if you are in a bad way with your pots until you feel better, you will.

Also increase fluid and salt.

Best of luck, Trishy

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I just found this thread and thought I would share my experience.

 

I have been on benzos for 7+ years and have had the worst physical problems the past year.  I have had problems since the beginning actually - beginning with shaking, moving onto GI symptoms and horrible back and neck pain.  (I didn't realize at the time, but these symptoms are likely from interdose withdrawal). 

 

I was seeing different specialists practically every week, and the tests were coming back normal.  Every month or so I would have a horrible near-syncope episode that was so scary.  Sometimes it was accompanied with cyclic vomiting that could last for a day or two.  I was just miserable, and convinced myself it was likely some sort of dysautonomia.  Nothing else made sense.

 

I was scheduled for a tilt table test in the Spring.  I had to go off all medications 2 days before the test, and I went into full blown withdrawal.  I never made it to the tilt table test, I was too sick the morning of the test.  Violently shaking, throwing up, sweating, it was awful.  I put the pieces together and figured out it was benzo related.

 

I still don't know if I have POTS or benzo issues or a combination of both.  I'm curious if vomiting is associated with POTS...I would often have that. 

 

Does anyone have any experience with a tilt table test?

 

Thanks for starting this thread!

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  • 2 months later...

I believe that I have POTS!

Those are my worst symptoms!

I've always had a weird HR and BP my entire life.

HR is always very low and would jump very high upon standing.

BP has always been low as well.

Never had any issues with them until I got sick this year.

Took Azithromycin and my heart and body haven't been the same.

Took Ativan to get onto Trazodone to help with sleep and now having trouble getting off of it.

Ativan seems to make the POTS symptoms worse, not better.

 

anyone else?

 

I wear full compression stockings the entire day.

Drink lots of water and lots of salt!

 

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