I Feel Like I'm Falling Apart -- I Don't Know What To Do

[lynnie22]

Lately I feel like a car wreck, and it is having a huge impact on my ability to do anything. I know that many of you have it much worse with POTS, and I don't know if these new symptoms are POTS related are not, but I feel like my body is out of control. It is very scary for me, because I work, live in NYC, and suddenly I feel unable to function. A few months ago, I developed this incredibly erratic blood pressure that is low one minute and zooming up to 160 or 170/120. I take inderol (probably for about three years now), and am always taking different dosages and when my blood pressure is high I am dizzy and can't function. Two months ago I tore my rotator cuff in my shoulder and have been in terrible pain and can't sleep well. I had a cortizone shot which hasn't helped the pain at all but may have worsened my blood pressure. They haven't come up with a plan for the shoulder, and are reticient to give out pain meds. But then I am not supposed to take pain meds until I have holes lasered into my eyes for narrow angle glaucoma--because any pupil dilation may bring on blindness. I have developed this constant trembling now, mainly inside, dizziness, alot of anxiety, and weakness. I don't know what anything comes from, nor how to make it better, but more and more I am canceling work, and fearing that I am going to have a stroke from the huge escalations in blood pressure. They have tested me for cortisol and metanephrine levels (blood and urine) and they are only slightly high. The Dr is going to do an MRI of my adrenals to check for tumors.

I know I am under a lot of stress. The eyes and shoulder are not POTS related, but not sure if all this other stuff is and what to do for it. I feel truly overwhelmed and scared.

Things just went from manageable to out of control.

[bebe127]

Lynnie,

So sorry you are feeling this way and I don't want to say trite words, but you are certainly not alone! I surely hope that you get some answers soon. Hang in there!!

Be well,

Bebe

[E Soskis]

Lynnie: sorry you are going through all of this - I know you feel terrible and stressed-out. I think we all walk a thin line with our health - it does not take much to tip the balance. I know that chronic pain can completely wear a person down. Your shoulder pain needs to be addressed in some manner: whether it is with a medication that does not cause problems with glaucoma, or biofeedback, or some combination of the two. Not sleeping also magnifies existing problems. When I don't sleep well, I can barely function the next day. When I experience a stretch of poor sleeping, I feel like a zombie. The combination of not sleeping and pain can certainly cause blood pressure issues. I'm not surprised that your BP is all over the place - the stress alone can cause it to rocket into orbit and your illness can cause it to drop like a lead balloon. Your body doesn't quite know what to do with itself at this point. Does your type of dysautonomia cause pupil dilatation? My pupils stay dilated - even in the bright light. It seems to me that your ophthalmologist would want to deal with your glaucoma ASAP since you have dysautonomia.

I really am sorry this is all building up with you - I do know what it feels like to be completely overwhelmed, scared, and insecure. It's not a good feeling and it is terribly distressing. If you can get your eyes fixed, your pain managed, and begin to sleep better, I would guess that things would become manageable again. I hope you can work all of this out soon - blessings to you and prayers for peace and relief.

[lynnie22]

Thanks for your replies. E. Soskis, I have no idea what type of POTS I have. Never told, recently retested, still don't know. I don't know if my pupils are dilated on their own and my opthamologist and other doctors except cardiologist and endo have never heard of POTS. I have never had this trembling before until a few days ago. Doctors think my very high blood pressure spurts are related to my level of adrenaline, but not certain.

I have immediately looked up biofeedback in the area. Thanks for the suggestion.

What do we do when we feel like we're having a complete breakdown? Monday is work and Friday I had to cancel work. Because I've been sick on and off for many years, I never saved money for old age, and here I am close to that time, and that sure is a stress if I can't function.

[E Soskis]

I wish I had all the answers - I feel your pain because I have to work also and if I call in too much, I could be fired. It is so hard to work when you feel awful yet, we have to keep going.....Is there someone you can talk to? Where I work, we have an employee assistance program with counselors on campus that will listen and offer advice and direction. Is there someone in your MD office that would help you sort out the type of specialist you need to see? I made friends with the staff in my MD office and it sure helps when I need extra direction and assistance. I know that worrying about retirement is a biggie - I would think about going out on disability retirement - do you have a disability insurance plan? - would your physicians assist you with social security disability? It seems like in a city as big as New York, there should be physicians familiar with dysautonomia, POTS, and the like. Are there members in the forum that reside in New York and can assist Lynnie with names of physicians and places to go for assistance??????

[Guest wishing&hoping]

Lynnie,

Go see Dr. Kaufmann at the NYU dysautonomia center. I live in DC now but used to live in NYC. My neuro here trained him and gave him high recommendations. I believe they have a full autonomic clinic. He's listed on the web site, but the secretary's # is 212-263-7225. I haven't seen him yet; am trying to get into Vandy sooner. They don't take insurance except Medicare, unfortunately, for testing.

Good luck!! We've all been there; I, too, know what you're going through. Get the same internal shaking--have been told it's the dys but it's worse when I have an infection or am in in pain. Klonopin helps.

Adina

[lynnie22]

Hi Adina,

Thanks for your support. I do need to tell you though that I did see Dr. Horatio Kaufman two years ago and then a few months ago to beg for his help, and I am certain your neurologist is excellent, but unfortunately, I had a negative experience with Dr. Kaufman. I did end up going to Dr. Weimer of Columbia Presbyterian who at least was able to give me a confirmed diagnosis through another set of testing.

Thanks for reminding me that things get worse from the dys with pain and other problems.

Lynnie

Edited April 7, 2013 by corina

[Guest wishing&hoping]

Hi, Lynnie,

Wow; I'm so sorry to hear that. I never used to lose my temper with docs before, but have been in the last few months...it's embarassing! I'm going to see someone in Baltimore; hoping to avoid a Vandy trip. Fingers crossed. I"ve also been unable to function; and although I'm on disabiiity am terrified about money and saving (hah!) for retirement. What a country we live in...it's ridiculous that we have to live in fear when we're sick. For what it's worth, when I pushed myself to go to work it made me much sicker; so be good to yourself and listen to your body rather than your fears (I keep telling myself the same thing...). Can you go on some Ativan (low dose)? That or Klonopin helps me, even with my very dry, dilated eyes. Not giving you advice, obviously...

Is there anyone else you can go see? Hopkins has a great eye center; as does Penn in Philly, if that would help one part of it. Can't remember their names now; but it might be worth the trip.

Hang in there!!

Adina

Edited April 7, 2013 by corina

[spinner]

IMHO i wonder if you have friends or family in a country setting. Or suburban.

Stress is the sworn enemy here. A regular schedule, avoiding flares lots of sleep

a diet that works.

Stress wrecks me. I dont care what kind it is. Noise, heat, arguments, haggling with

insurance, doctors appointments, work, loud voices.

Tranquility is your ally.

[cupcakemomma5]

Sending you peace calmness and always a huge (even virtual ones make a difference )

[blueskies]

IMHO i wonder if you have friends or family in a country setting. Or suburban.

Stress is the sworn enemy here. A regular schedule, avoiding flares lots of sleep

a diet that works.

Stress wrecks me. I dont care what kind it is. Noise, heat, arguments, haggling with

insurance, doctors appointments, work, loud voices.

Tranquility is your ally.

yes, yes and yes. ive started using a meditation tape so I can get back into meditation daily. this helps.

if I could live on a beach and swim in the ocean most of the time I think that would be perfect 4 me.

blue

[lynnie22]

You are so right about STRESS....and WORRY....Living in NYC has become a stress, because of the expense. I just came back from a POTS doc, up at Columbia. Not much to offer in the way of fixing. Said I have the type of POTS that is about having an overly sensitive sympathetic nervous system, reacts 10x more to everything. Whatever type that is. For the last couple of weeks, my whole body has been shaking. Think it may be hyperthyroid, since my body cannot assimilate the synthroid it is dependent on. But maybe it's partly anxiety and STRESS.

Blue, I like that thought. My idea of perfect living.

Thanks Cupcake for the virtual calm. I need it.

[Mydoggielovesme2]

Hi Lynnie, how is your shoulder doing? I gave in and got another cortisone injection. Truthfully I feel so much more in control of things. The pain was wearing me out, and making pots symptoms worse. The pain is about 95 percent gone for now.

I hope you are able to get some help and answers soon for all that you are dealing with. Hang in there!

[lynnie22]

Hi Mydoggieloves me. My conrtisone injection did nothing. It's in terrible pain which is why I'm up at 4:30 in the AM. I think I'm going to give in and get another myself. My shoulder is torn and frozen. I went to a new ortho and he felt that a guided shot into the joint will free up the freezing and the PT will help it then become unfrozen, the main source he thinks of the pain.Makes sense even if I hate the injections.

Glad you're feeling better!

[spinner]

IMHO a pots patient is suffering from multiple issues----nervous, immune, digestion, sleep, chemical, reaction, food sensitivity, systems.

I have to be honest, i cannot comprehend living in new york city and working a stressful job.

I have gotten my life to the point where i control most things: i excercise but its a very fluid and controlled hour where i walk at a moderate pace.

I eliminate any stressful noises including loud music, television, alarm clocks, or city noises.

I try to eat natural foods such as sweet potatoes, oats, bananas, etc.

I try (but fail) to keep a regular sleeping pattern although i ALWAYS ALWAYS get enough sleep. I never go to work tired if i can help it.

I know what my body is allergic to. I know what medication works for me in a flare (klonapin).

I avoid unhealthy loud people. I am religious about avoiding heat, and love cool weather, and have learned to breathe deeply on a daily basis.

I eliminate toxic people or judgemental ignorant people. This includes people who deny Im sick because I "look fine". This also includes bad doctors.

I live in a suburban setting, but if not for this it would be country.

I love the company of pets, especially calm dogs who are good companions.

I avoid watching the news. My bad news is enough bad news.

I take one day at a time and try to enjoy the very basics of life.

I value one good friend over 20 acquaintances.

You are so right about STRESS....and WORRY....Living in NYC has become a stress, because of the expense. I just came back from a POTS doc, up at Columbia. Not much to offer in the way of fixing. Said I have the type of POTS that is about having an overly sensitive sympathetic nervous system, reacts 10x more to everything. Whatever type that is. For the last couple of weeks, my whole body has been shaking. Think it may be hyperthyroid, since my body cannot assimilate the synthroid it is dependent on. But maybe it's partly anxiety and STRESS.

Blue, I like that thought. My idea of perfect living.

Thanks Cupcake for the virtual calm. I need it.