Severe Debilitating Anxiety

[weathermandj]

I had created another post that talked about the Florinef I'm on and I thought maybe it was making my anxiety worse. I dunno if it is or not. I have had severe anxiety for awhile now, but it keeps getting worse and is to the point where I am not leaving the house, not only due to anxiety but also due to POTS in that I can't walk long distances without feeling tired. The Florinef helps my POTS, but it's still hard to walk long distances due to fatigue. But, back to the anxiety. My anxiety is so severe and I get this tightness in my chest and a rushing of adrenaline feeling. I feel extremely jittery all the time and completely on-edge. My doctor has tried literally everything. My Psychiatrist is to the point of saying I should consider experiemental brain surgery where they actually cut a portion of the brain. He said I'm extremely treatment-resistant and he's tried all the SSRI and every SNRI and a few tricyclics and other misc. antidepressants/drugs. Xanax works very well, but stops working after 2-4 weeks and I need dose increases and after getting to 2-3 mg/day he said that far too much Xanax to be taking and that he can't raise it further because that's a slippery slope to go down. I would need a dose increase again and again and that's bad, he said. So we're completely out of med options. I'm on Tramadol now and that helps my POTS some. I still have extreme anxiety and severe insomnia. I feel so on-edge with adreneline (feels like it) that I can't fall asleep nor stay asleep.

I don't know what to do. I'm on SSD and have been disabled for 4 years now due to anxiety alone. What should I do? Anything else I could try? And trust me, I've tried herbal stuff like Valerian and no luck.

Thanks.

[cupcakemomma5]

I am so sorry you are in this boat.

I will talk from experience, I was at a point in my life (15 years ago) where the anxiety was so ridiculously bad I physically couldn't get out of bed. The thought of even going to the doctor would send me into such a tailspin, rushing heart, sweating, the feeling of either vomiting or worse....the other end : ( it was scary.

At the time I wasn't on any medications and was not diagnosed with POTS. So I had to do it on my own. I really got into meditation, yoga deep breathing....all that stuff...lol. Know what, did nothing for me...lol. I gave everything a try.

I was so tired of thinking I was crazy, till I found this one doc who realized that there was a missing synapses which triggered anxiety like symptoms. She put me on celexa and there I stayed for 12 years. Now after all is said and done. I ended up in hospital in Aug. With all the same crazy like symptoms and was finally dx with POTS. Put on proper meds and have been symptomatic free. Anxiety is still somewhat there, she upped my dose of cymbalta, and so far so good.

I don't know if any of my babble will help. Just hold on, there is always some forms of light at the end of our crooked tunnels (if they were straight,we'd be like everyone else......just a ittle boring. Sending hugs.

[weathermandj]

Thanks @cupcakemomma5!

I'm sorry to hear how rough it was 15 years ago for you. That's really severe anxiety to not be able to get out of bed. I'm glad you were able to find medications to feel better. You mention the hospital and I'm all too familiar with that, unfortunately. I have been hospitalized for anxiety 10 or 11 times now! Last time was in February. So I'll continue looking for meds to help. xD

[weathermandj]

Question...Is POTS induced anxiety not helped much from talk therapy? I get what feels like surges of anxiety/adrenaline/extreme fear/doom in my chest; a tightness in my chest. Does that adrenaline type anxiety even respond to "talk" therapy? It seems like a chemical issue here, even if it POTS induced. I honestly think a lot of my anxiety is because of POTS. Talk therapy (CBT and Exposure Therapy) has never helped me. I've tried those for over 2 years and also tried intensive-outpatient therapy and I feel worse off now than ever. Thanks.

[AussieOI]

Hello Weathermandj,

What are you anxious about exactly? I know when I got diagnosed last year I got a bit anxious and was often scared to go out as I thought I was going to faint. I never did but I did feel quite nervous. I didnt go on any meds for it as it was manageable but I do empathise.

If you are anxious about your symptom kicking off when you are out perhaps trying safe activities first could be good. What I did would be to go out with my sister who knew about my POTS and we would go for a coffee on the understanding that if I felt odd at any time then I could go home asap. Maybe trying small steps like even going for a 5 minute walk could be good.

Did you anxiety start before or after your POTS diagnosis?

Have you tried different doctors? Experimental brain surgery does not sound like a good thing to do. I would try and see if here are some meds that could help (I know you are trying with that).

Aussie

[weathermandj]

I have had anxiety before POTS started, however after POTS started, my anxiety was even worse. Sometimes I don't even know what I'm anxious about. Sometimes I think the anxiety is just there and maybe that is POTS at work. Other times, I can identify things making me anxious. I spend about 8 hours a day in OCD rituals, literally. I am anxious about my OCD. It's common for me to have a panic attack every 2-3 hours. It's all day long that I'm having panic attacks. I fear crowded places. I have not left the house much in over a year because I get panic attacks in public and am afraid of having more in public. I have lost every friend. I now have 0 friends. I am jittery all day long. Sometimes I am literally trembling with anxiety. I have had 5 panic attacks today. I'm miserable.

[weathermandj]

Another thing is that I'm usually hospitalized every few months. Over the past 3 years I've been in the hospital 10 or 11 times now. I can't even count the number of times at this point. I am in therapy but they tell me I am making no progress. They gave me a personality test and it came back that therapy probably won't work for me. My doctor said I'm the most severe difficult to treat patient ever that he has had. I don't know what to think of that!

[weathermandj]

I can't talk about Marijuana in Ohio, but I was told that I could move to a medical Marijuana state and try that. I don't have the money to move out of state right now. That may be my last hope, medicine wise, at this point before surgical options are considered. I have tried about 40 medicines already for my anxiety. We're out of options now. It's to the point that when I end up in the hospital, no new medicine can be tried on me to get me stable.

Oh yeah, yes, I've tried many different doctors. Many different therapists. I've been seeking treatment for over 5 years now. Doctors, therapy (CBT and Exposure) don't work. I have PTSD and EMDR didn't help and I battle many nightmares every single night. Prazosin was tried but I had a severe adverse reaction (priapism) and had to stop it.

Antipsychotics make me shake uncontrollably. I get Parkinsonian and Dyskenesia symptoms.

I've tried every SSRI, every SNRI (can't take any SNRI as they all cause urinary retention with me), a couple tricyclics (can't take them because they all cause urinary retention), can't take MAOIs, Remeron and Trazodone didn't do anything, Viibryd didn't work either. Tried BuSpar and it was like a sugar pill.

As for combating urinary retention, well, I have urinary retention to begin with. I am on an alpha-blocker that helps, however, the above medicines create such a strong retention of urine that they havn't been able to combat that side-effect, so the medicines above were discontinued.

[jangle]

I too have/had severe anxiety before and after POTS. POTS likely involves a reduced expression of norepinephrine transporter - a protein which removes norepinephrine from your sympathetic nervous system (SNS). It being deficient means norepinephrine is staying longer in your SNS and thus overactivating it.

In terms of treating it, you could ask about clonidine which is something that would reduce your norepinephrine output. Not really sure how effective that would be as it would also reduce your blood pressure which may or may not exacerbate POTS symptoms. Endurance exercise will tend to reduce your serum norepinephrine levels, that might be a better alternative as it could work on your POTS symptoms as well.

Psychotherapy can be effective, but it depends largely on the relationship you develop with the therapist and it can be a long process.

I would personally avoid any kind of brain surgery as that can lead to lasting permanent deficits.

[ramakentesh]

Many pots patients experience anxiety as a symptom. Reductions in blood flow to the brain can cause anxiety. If there is a sudden reduction in brain blood flow the body shoots off adrenalin to try and increase blood pressure. However it works poorly and by stimulating beta 2 receptors it makes postural tolerance worse.

as jangle explained, some pots patients seem to have reduced notepinephrine transporter expression which as well as deranging the circulatory response to standing, allows notepinephrine - the key neurotransmitter of the sympathetic nervous system to build up at the synapse and leak into plasma further sensitising the bodies sensitivity to fight or flight.

add to this parasympathetic withdrawal and beta receptor super sensitivity and its a recipe for anxiety related symptoms.

I had postural anxiety at one stage and that overstim thing. Now days less so. I found that florinef and mestinon completely abolished it.

[ramakentesh]

My relapses of pots are all different though. Now days I don't get the symptoms of sympathetic excess more just dizziness.

[Relax86]

I have found that meditation, and breathing help anxiety. It doesn't help my POTs. I actually think reading and hanging out on the forum brought me peace from the anxiety as I found more people with like symptoms. Reducing the fear made a big difference for me. I'm in a little flare right now and with the anxiety reduction I have less surges so POTS is tolerable. I hope you find your center or distraction from the anxiety. When it was bad I played mahjongg on the computer. It passed the time and helped me focus on something other than symptoms. Good luck

[bebe127]

So sorry you are dealing with this. I too have anxiety which increased after POTS. I am on Xanax which, I feel helps me tremendously. At times I have to double up, but my dose is low so it's ok. I try not to double up as much as possible and just try to ride out the wave with laying down, breathing, relaxing, music, singing, praying. I was in therapy for a short while and the only help I really felt I got was when she suggested a book called The Anxiety and Phobia Workbook by Bourne. It really helped me and has bunches of information as well as tips and things to do when anxiety strikes.

I know for me, my anxiety is triggered by many things, leaving the house, having to drive, dealing with emotional stress is a BIG one for me, as well as just plain ol' fear of the unknown. I have found that positive self talk is really helpful for me. There are many affirmations that are found in the book above. I know it might sound simplistic, and you've explained your axiety as being severe and you've tried many things to combat it to no avail. Keep up the search, I'm sure there is an answer for you out there, hopefully right around the corner. Chin up and don't give up

[tinkerbella]

(((((((BIG HUGS))))))) Know that we are here for you! POTS has our whole body in a constant state of confusion, it is no wonder that there is anxiety! Try to live in the moment. Have someone check and see if any of your meds side effects are causing extra anxiety.

If you have a smart phone or iPod use free apps that help you to relax, stop worry, to sleep and others to just distract your mind.

Keep us posted on how you are doing. We all care here.

[AussieOI]

Are there any anxiety type forums or websites where you can chat to people with similiar issues?

What about alternative therapies such as acupuncture, or even doing a relaxing activity like swimming or going for a massage (I realise these are expensive though).

What about group therapy via the Internet 'Skype' where you can talk with people in the same boat? I suppose this would exist?

I would also try and work out what things you enjoy doing and make you happy. I agree that breathing excercises, self talk etc are supposed to be good for anxiety. It is difficult as POTS symptoms alone can be scary and cause anxiety and then this probably makes things worse.

[sue1234]

Have you been evaluated for a pheochromocytoma? I'm with Jangle...see what your doctor thinks of trying Clonidine. The alpha blocker would be the first thing they would use on a person with a pheo(it shoots out alot of noradrenaline).

[weathermandj]

Thanks everyone for caring and for the responses. I have actually asked my Psychiatrist about clonidine. He said I could not take that and a beta-blocker together. Is that true? I thought some people take both clonidine and a beta-blocker. Maybe I'm wrong. I've looked into clonidine and really want to try it, however don't want to get off my beta-blocker, as when I miss a dose of my beta-blocker the tightness in my chest is worse and the adrenaline feelings are worse. I have had a 24 hr urine test for pheochromocytoma and it was normal, thankfully. My doctor has even test my testoserone levels and they're normal. Corisol levels were tested and are normal. I'm on an alpha-blocker right now, Uroxatral ER, for urinary retention. My urologist said POTS may be causing my urinary retention and they have a new pacemaker treatment for bladders that he is suggesting because medicines are not working well for my urinary retention. Perhaps a bladder pacemaker will allow me to try medicines for my anxiety, like the SNRIs, that gave me urinary retention even worse and maybe I can pee on them this time around. It's a mess. I do have a medication sensitivtiy. I've tried every SNRI, like Cymbalta, Effexor, and Pristiq and can't pee on any of them unless I self cath, which I already have to do sometimes off of medicines. :/

[pianoman]

My hopes are with you weathermandj!!!!!!!!!!!!!!!!!!!!!!!!

I am an OCD sufferer too( along with POTS of course). 6 months ago, when my OCD at its worst, I was performing head rituals for most of the day. In that time tho, I've made a good amount of progress with Clonidine and CBT. My clonidine is 1/2 of .1 mg tablet four times a day(net of 2 (.1) mg pills). And I've taken that with my beta blocker. Ive felt great on both meds and clonidine really helped my OCD. The first couple days on clonidine made me feel a little more "sensitive" like on touch(or something a little weird, i dont really know the exact words to describe it), but nothing like symptoms of what I've heard SSRI's cause-i've avoided those.

I'd love to personal message you, if you'd like!!! I'm a newbie, so is there a way you could pm me?!!

[blueskies]

Hi Weatherman,

I have had many years of panic attacks and anxiety. After I was diagnosed with POTS the panic attacks mostly went away. The anxiety however did not. I think the panic attacks were caused by not knowing what was happening to me. I can still have a panic attack but not nearly so often.

I'm on Xanax and yes it's a highly addictive drug of which people usually need more and more to get the same effect as time goes on. I'm 57 so I don't worry so much about taking Xanax -- I figure at this age what's the difference. But if I was young like you I'd have avoided taking it if I could. I only agreed to take it, pre-POTS diagnosis, because I was so over 20 years of panic attacks.

I've also dealt with OCD in my life but it's never been to a crippling degree.

Really for myself, I have found that the only answer to fear of leaving the house and being around other people etc is to keep telling myself that it doesn't matter what other people think of me (and that they aren't giving me much thought anyway). When I was falling down from POTS and was finally diagnosed with it some years back I went through a stage where I could not leave the house. Then I thought, stuff it I'll do what I need to do to get out. So I learned to sit down in the street (on the footpath/sidewalk of course) when I felt those pots falling feelings coming on and I learned to sit on the floor in supermarket lines and bank lines etc. Whenever I found myself having to stand in line I'd sit on the ground if I have to. It became amusing to watch other people's reactions. Some would edge away from me like I had the plague (their problem) and others would ask me if I could help and I'd tell them I had a balance disorder and needed to sit but otherwise I was fine. And it really made such a difference to me, I was able to get out and about a bit more because I gave myself the permission to react rationally to my symptoms rather than try to grit my teeth and try to fight them.

Unfortunatey 2 years ago I had to have spinal surgery and age and damage to the spine makes it hard for me to get off the floor once I get down so I'm finding I'm having trouble with standing - I've been going through the sweating, feeling sick while standing and waiting, but more often just staying home. Which is not helping my dysthymia (ongoing long lasting low level depression occasionally punctuated by severe levels of depressioh -- that's the diagnosis and I'd agree). But Only last night I remembered some exercises that someone told me about on another pots forum a few years back. She told me when I find I have to stand, to cross my legs and tighten my leg muscles and sort of push one leg against the other. The idea is to keep the blood from pooling and make it pump upwards avoiding the lightheaded "I'm gonna fall' feeling. Maybe this will help me. Just thought I'd mention it to you to. I'll be trying it next time I'm out. I think it was jet pilots that she said use techniques like these to stop from passing out at high speeds. Not sure but worth googling, probably.

Summer is hellish for many pots people. I wonder if the word hellish will get through the censor. LOL.

blue

[weathermandj]

Thanks @pianoman. I like your username. I play guitar. I have PM'd you.

Thanks@blue. That's good that you have found ways to cope with your anxiety. I'm learning to change my mindset right now. lol That's pretty funny about the people's reaction with sitting down in line. That's good that you were able to do that and not worry about what other people think. I always worry about what other people are thinking, so that is something I need to work on.

Sorry to hear about your spine. That sounds pretty rough. Can you use a wheelchair if you want to go out of the house? Maybe that would make things easier? But, yeah, summer ***** for me too. I am dreading the weather changes. People always look at me like I'm crazy when they're complaining about how cold it is and I say that I love it. lol They get this deer in the headlights look.

[ramakentesh]

There was a guy on here who got sudden acute POTS and had SEVERE anxiety that was completely abolished with mestinon. Not suggesting medical advice here, but something that might be worth mentioning to your doctor.

[dpeeps]

I too deal with a lot of anxiety, but nothing like the time leading up to my POTS diagnosis. I was CONVINCED I was dying. I had never been so sure of anything in my life. Prior to POTS, my doctor used to give me a hard time that I needed to keep up with my annual physicals, etc. I hardly ever sought or needed medical care. Anyway, I am much better knowing what I have and that anxiety is a normal part of POTS. I don't tolerate any meds well, except Xanax. I take a very low dose and only when symptoms flare or feeling particularly anxious.

Non pharmaceutical stuff that has helped me (other than salt and water Talking about the anxiety seems to help a little bit. We always try to be so strong. Tell your family or friends (or this forum) how you are feeling. It does seem to help. Also, this may sound weird, but find a way to laugh. Have you ever been laughing really hard and felt anxious at the same time? It is kind of impossible. (yes, there is "nervous laughter"), but I am talking about genuine laughter. Acupuncture has helped me a lot too, though I cannot afford to go as often as I would like to (my insurance will not cover it). Right now I am hooked on "Easy Now" tea by Traditional Medicinals. Magnesium tablets too.

None of these things are magic bullets, but in combination have helped me. I still have bad days too though, so it is a work in progress. I think trying new things also, gives you a sense of power, control and of 'moving forward', all which help lower the anxiety threshold.

[kitt]

.

[ramakentesh]

I would say that if your NE is over 600 then you have a hyperadrenergic presentation. Some patients can have NE as high as 5,700! Most are around 500-700 on tilt. Since tests for neuropathy are abnormal in the same percentage of those below and above 600 that arbitrary amount is probably not meaningful.

[cupcakemomma5]

Question...Is POTS induced anxiety not helped much from talk therapy? I get what feels like surges of anxiety/adrenaline/extreme fear/doom in my chest; a tightness in my chest. Does that adrenaline type anxiety even respond to "talk" therapy? It seems like a chemical issue here, even if it POTS induced. I honestly think a lot of my anxiety is because of POTS. Talk therapy (CBT and Exposure Therapy) has never helped me. I've tried those for over 2 years and also tried intensive-outpatient therapy and I feel worse off now than ever. Thanks.

I personally found that talk therapy was more useful for coping mechanisms, rather than ease the anxiety. Now, that being said, she did have me get a hr watch, this way here I was able to "see" rather than feel what my heart was doing, and if it was a POTS anxiety (hr would shoot through the roof) or if it was just normal anxiety. This did help.

As for marijuana, I found it made my anxiety worse...

Always worried about what others thought..."So just because she gets anxious, she is now a druggie.....hooked on pot, not like she has enough pills, but now she smokes dope all day "........lol

I have a tough family. Had to move 2 hours away to finally be sane...lol

I also learned from being in the hospital....we are fortunate. We are alive. Yes days can be cruddy. But hey we woke up and took a breath. OCD, Anxiety and POTS....the pity card came out often for myself, some days it still does.

I had to take a new outlook on life. Not to care what others thought. I had to place my health and happiness first. It's hard to do. Trust me, there are still days that I feel like I have let someone down,or hurt feelings, Or I am just failure! but then I look at myself (really in a mirror) and remind myself that I have been less symptomatic since I let go of all the crud and to keep going.

If ever you wanna pm me, please do.

I can always listen or rather read ; )