Please Any Advice? Desperate Now

[Maisie87]

I've had POTS for about two years. Over the past 8 months I've rapidly gotten worse- in February I could jog and go for long walks, now I'm in a wheel chair if not in bed. I'm typically a strong person, but the progression seems backwards. I'm scared. really scared. I'm 22 and am getting worse. Does this make sense to any of you with dysautonomia? Is anyone else bedridden completely? I've started having panic attacks and crying spells- having a really hard time finding a handhold with this illness. Please, any words will help. Anything. Thank you so much.

Maisie

[maggie]

Maisie,

So sorry to read that your health is going downhill. When I first had my symptons I could walk and move around quite well without my heart rate going too high. As soon as the doctors started me on meds is when I went downhill fast. I'm not saying this is the cause for your issues just telling you it can happen. I had the same reaction as you, panic, crying, and really fearful of what was going to happen next. I was bedridden for six month, wheel chair for a year. Now it's four years later and I'm no longer in a wheel chair except if I have to walk really far. I'm not near to normal yet but far from bedridden. Hope you can find some answers soon.

Maggie

[lissy]

Sorry your feeling so bad. My POTS seems to be getting worse also I don't go back to the doc intil Jan. so I guess I have to hold out for alittle while longer. Do you take any meds? I haven't tried any yet so I don't know if that will help . My opinion is this is a daily battle I have 2 small kids that I'm with 24/7 and I don't get the rest I need and I guess in a way I'm kinda lucky I'm not wheelchair bound or bed bound because I probally wouldn't be able to have my kids. I get a break maybe twice a year no family offers much help because they don't know how sick I am. I leave the house maybe twice a month compared to just at home to sleep a few years ago.....I know about the panic attacks also I've been having them since I was 18 I'm 31 now. I have read everyone symptoms and severity varied so much but we almost all have the basics. Do you have a support system? (this is my only one) I have had many days of doing nothing but cry and somehow I end up telling myself I'm lucky to be alive even though most of the time I don't feel like I am alive. I guess it may be good to talk to a counsler that deals with chronic illness it may help work through your feelings or just come here we all understand and I feel so bad for you to be dealing with this at your age hopefully things will get better and pass quickly for you.

Lissy

Hope this helped some way you can talk to me anytime

[Guest tearose]

Hi Maisie,

I am sorry you are in such a difficult place right now. Yes, I have had severe relapses where I was bedridden. I did not use a wheel chair, I would crawl along the floor to a nearby chair then climb up. I have used a walker and seat cane. Just about 2 years ago I thought I may have dementia. There are times it seemed I was having MS... These times, the worst of times did slightly improve over time. A long time. I am managing better now but I always have to be very careful not to push too much or too little.

I pray this most difficult time will pass for you. In my roughest times, I map out every step and take them one by one. I need to manage electrolytes, hydration, compression, rest, food, temperature, activity...and find a way to balance it all. I have been dealing with dysautonomia for 18 years so I have a lot I have learned. Most important is to learn all about your own body. Understand it and work with it the best you can.

Do you have a good pcp? Can you discuss options for your treatment plan?

Keep asking questions on how to manage and keep having hope for better.

You are not alone, never, ever. We have been and some are where you are and we lean on each other. Please do not despair. The symptoms cause enough of a fast heartrate and if you can learn how to minimize your panic that will help. Do you do anything now? What do you do to manage your symptoms now?

Sending you peace and love,

tearose

[MamaTrain]

Maisie,

My heart goes out to you. So many people on here, no matter what the cause is, have been fighting with their dysauto for a very long time and what a battle it has been! I've never done this on her and I dont know if you are a praying person but I'm going to step out on a limb here and I'm going to pray for you right now! Lord I lift up to you this young girl who is struggling so much right now. I ask that you give her comfort and peace. The kind of peace that only comes from you Lord and is able to calm the fear that resides inside her. It is this fear that breaks her down Lord for she may be so afraid that she is in jeopardy of leaving the beautiful life you have blessed her with. Wrap your loving arms around her and remind her that you are there and you do care so deeply for her. I pray these things in deepest hope. Amen.

Hugs to you,

KC

[Janey]

Hi Maisie,

We all do understand and I'm so sorry you're going through this. We never know what's going to happen with this illness, but I'd say a lot of people with dysautonomia and POTS experience symptoms which go up and down over their life. When it first started affecting me I was floored, couldn't get out of bed for a year, couldn't walk 10 yards down the road. I had a period of 4 months when it all mostly went away and then it came back with a vengence for another 7 months. Currently I've got moderate dysauto, which means I'm not in a wheelchair and can walk, but I still spend most of my time lying down. If your symptoms have changed so dramatically in months, it is perfectly possible that they could dramatically change back - if that is your body's own personal style.

Are you being treated by a Doctor for ALL your symptoms? If you feel some of your meds aren't right for you, remember to look for alternatives, ask for different things, don't settle for substandard treatment or substandard help with this condition. Look for recommendations of herbal medicine, acupuncture. Keep searching for what might help.

In terms of getting a "hold" on it and being able to say "okay, this is as bad as it's going to get," , I know exactly what you mean and it takes a while. When I first got diagnosed I was having crying fits, panic attacks. I would go to bed crying, fall asleep, have 8 hours of release from the physical **** I was going through, then wake up and cry again. It DOES get better, I promise you. You learn to deal with it, you learn new things while lying down. I've become a reader again, I've seen documentaries I would never have seen if I hadn't been bedridden, I've written stories and poems for magazines and I concentrate and listen so much more. And every time I do manage to go out and do something, I always do it well and to the best of my ability. I'm sure you will find this too.

And things change.. my Aunt, we've discovered has lived with and coped with dysauto all her life. She's never been able to work and has had a lot of a abuse from it, but she's finding that while she's going through the menopause, it's disappearing! It's going! Which means, hopefully that she is going to live the rest of her life without this wretched disease.

Please keep an open mind, know that we're all here with you and we do understand. And please remember that ANYTHING can happen.

Janey

[Mrs. Burschman]

Hi Maisie. We understand what you're going through. I think that nearly everyone here has fallen into what we like to call "POTS holes." Symptoms get worse, and then they get better. Then they probably get worse again. It's really frustrating.

Medication can make a big difference. Have you and your doctor looked at that? Paxil has worked wonders for me -- well, until I fell into my own POTS hole in September. I need to find a good doctor (I moved this year) and revisit my medications. Bleah.

Please don't give up, and we're here for you!

Amy

[Notgivinup]

Maisie, Last year at this time I had to go Christmas shopping for my little boy in one of those store scooters. (I was 44 yrs old).

Today I took him to a play date at a Bounce Around. (giant blow up things you jump in). Lots of kids, lots of stimulation, horrible bright lights etc. I was fine.

You are very young. You will most likely grow out of it. It will not always be the same. Even if you don't completely grow out of it, symptoms will get better. Like others have said. There is one thing about POTS you can depend on, it is NOT dependable.

Sending you healing thoughts.

[Elenapap11]

My dear Maisy how i feel for you!The first time i got severe symptoms-two years ago-they didn't even know i had POTS.I spent almost two months in my house and i couldn't stop crying.All the doctors thought i was depressed and that it's all in my head...and i felt like dying.I thought my life was over.At least you know what it is and you should also tell yourself that as suddenly as you came to this situation you'll wake up one day and start feeling better.Are you taking any meds?Maybe you are not getting the right treatment.When i was taking Zanax i was bedridden but when is stopped it i started getting better.

Stress makes you worse so try to do things to relax...I listen to music,watch my favourite movies and i have seen that reflexology helps me too sometimes.(it's like a foot massage but they press certain parts of the foot which communicate with different organs of the body)Try out many things and whatever helps you do it as often as you can.Oh!and make sure to be surrounded by people who support you because you need all the positive energy you can get.Don't be bothered with people who upset you.

I'll be praying for you to get better.

Elena

[sandymbme]

Maisie,

I think we all go through ups and downs with our symptoms. I think the scariest part is not knowing where the "floor" is, or just how bad it is going to get. Make sure that your doctor is aware of all of your symptoms, and the severity. And definitely don't rule out alternative therapies such as accupuncture, or herbal/nutritional supplements. Hang in there!

Sandy

[goldicedance]

Maisie,

How I ache for you.l

I am surprised that you are not on any treatment plan.

I suggest that you find a PCP who is willing to treat you. There are many informtive articles/research studies/findings here on POTSPLACE. You could bring those articles to your PCP, highlighting suggested approaches.

There are certain "primary" meds for treatng POTS-beta blockers, Midodrine, Florinef, SSRIs, to name a few. If your doctor is willing (and he/she should be), the best approach is to add 1 med at a time so you know which med might be causing a reaction, if any.

On your part, you need to be willing to try the meds and even put up with mild side effects (example, Midodrine can cause the feeling of itching in your scalp, chills) tha aren't harming you as long as you are getting some relief.

Also, you need to keep in mind that waiting until January when you are feeling so rotten is not an option. Moreover, if your appointment is out of state, it is even more important now that you find a local doctor. You can't rely on an out-of-state doctor to treat/manage your POTS. You can't put all your eggs in one basket.

I suggest that you may also want to find a cardiologist who is willing to help you. Many cardios (especially electrophysiologists) are somewhat familiar with POTS.

Have you had a TILT Table test? A poor man's Tilt table test? That test is extremely important in diagnosing POTS.

If you are going out-of-state to the doctor in January, it is extremely helpful if ou can bring findings from the various tests you have had. The tilt is fundamental. That doctor might find it helpful to know what meds you have tried and the results.

You need to be really proactive in your treatment. Ultimately, it rests on you to be comfortable with your doctrs and to switch doctors when you are not.

The more time you spend in bed deconditions you further (a healthy person who was confined to be) would also get deconditioned. Deconditioning causes lightheadedness, tachycardia, etc. The need to be more upright seems paradoxical because we tend to feel better laying down.

Keep fighting, Maisie. The POTS road has many potholes. What works today may not work tomorrow.

I have been fighting since 1993 when POTS was rarely mentioned in the medical literature. I have been in ruts and further into POTholes.

Let us know how you are doing. We are here to support you.

Lois

[Maisie87]

Maisie,

So sorry to read that your health is going downhill. When I first had my symptons I could walk and move around quite well without my heart rate going too high. As soon as the doctors started me on meds is when I went downhill fast. I'm not saying this is the cause for your issues just telling you it can happen. I had the same reaction as you, panic, crying, and really fearful of what was going to happen next. I was bedridden for six month, wheel chair for a year. Now it's four years later and I'm no longer in a wheel chair except if I have to walk really far. I'm not near to normal yet but far from bedridden. Hope you can find some answers soon.

Maggie

Thanks so much Maggie, and I'm glad you are improving.

[Maisie87]

Wow, I woke up this morning to all of your supportive and compassionate messages. I'm pretty new to the forum and so glad I joined.

Thank you all, so much for your messages. What a comforting feeling it is to know there are people who understand and support you. Really, a profound thank you.

To answer some of your questions..

I had a primary care doctor until I got diagnosed with POTS. (I went to Mayo in MN two months ago and was diagnosed there, they said I've had it for two years). My PCP had never heard of POTS. So I'm searching in Atlanta right now (anyone know of a doctor?).

My "plan" right now is mild exercises while laying down, lots of fluids and salt, meditation, and a gluten/dairy free diet. I was recently prescribed Florinef and plan on starting that this weekend.. though must admit, I've had such bad reactions to most medications that I'm really apprehensive about starting new ones. As soon as finances permit, I plan on pursuing acupunture and reflexology. I've been very responsive in the past to alternative therapies.

My blood pressure, though on the low side (it's always been lower, even before POTS-no change there) is not my main problem at all. It's the tachycardia. Isn't Florinef mainly to help blood pressure? I'm not sure how I'd benefit from florinef.. I've become jaded and untrusting of doctors over this two year journey to a diagnosis, I'm guessing that sounds familiar to a lot of you.

goldicedance asked if I've had a TTT. Yes, Mayo performed it. My BP only dropped about 10 points but my HR jumped from 65 to 120 and remained over 100. More recently though, my heart rate has been about 140 when standing, and around 100-110 when sitting upright.

I'm going to an ENT this afternoon just to rule out vertigo.

best wishes to all of you

Maisie

[potsgirl]

Maisie,

Please keep us updated on how your ENT visit goes, and how you're doing. There are many of us fighting along with you!

Cheers,

Jana

[Maisie87]

Maisie,

Please keep us updated on how your ENT visit goes, and how you're doing. There are many of us fighting along with you!

Cheers,

Jana

will do, thank you

[Stormie74]

Maisie,

{{{{{{{HUGS}}}}}}}}

Keep us posted on how you are doing. Try to keep your chin up and know that we are always here to talk to. When it seems like nobody understands and the world is getting harder and harder, lean on us. Feel free to contact me privately. I'm never far from a computer.

I have found it very helpful to have lots of good reading around to take my mind off my health problems. If you are a reader, find some funny books or some uplifting reading. It won't take the problems away, but it can hopefully provide a distraction, even if only for a few minutes at a time.

Good music, good friends, and a good doctor are all a must.

Again,

{{{{{{{HUGS}}}}}}}}

Caron

[ladyt]

hi..

hang in there... I have been up and down and up and down.. And even when up, i could very quikly get down.. (i am a fainter)

now i have had some very bad years and I tryed to adjust to that.. And the adjustments have paid of, last couple of months i have done some improvments.. I know its a very britle balanse. that my healt is better and also not... I cant really do much more, but i feel a bitt better not doing anything , and that in its self is great.. i use wheelchair in house and out of house.. Last week was awfull pots wise, back in the total hole.. This week better, i whent out to day, in a wheelchair and someone to push..=)

During the years i have tryed many many things, exesising wise, etc... And i have tryed them again in difrent ways.. now i have tryed acupuncture.. So fare the pots pots stuff isnt really better, but pain is.. And less pain meens a bitt more sleep etc ets.. So i hope it will help whit the pots side effect at least and the how know..? And maby been out today was to much for me, so if this weekend gets to potsy, well.. hopfully next week will be better maby...

if u can find a way to not be afraid, not lett the anxiety gett a hold on u, that will make it easyer. But not easy.. We are all diffrent and deal whit stuff diffrent.. And know my brain is gone to a place i am not.. hope this helped, ... u are not alone..

u are not alone

[Mrs. Burschman]

My blood pressure, though on the low side (it's always been lower, even before POTS-no change there) is not my main problem at all. It's the tachycardia. Isn't Florinef mainly to help blood pressure? I'm not sure how I'd benefit from florinef..

Hey Maisie! I'm glad that all these friendly messages have helped you!

I'm not a drug expert, but I think that Florinef does help with tachycardia because it helps the body retain water. Not having sufficient blood volume can cause tachycardia, if I'm not mistaken. Like the heart's trying really hard to pump the blood around, but there's just not enough of it.

Amy

[erikainorlando]

I would be remise if I didn't mention that beta blockers have given me a new lease on life!! I just really can't get around at all without them. I still have many symptoms but I really couldn't function before beta blockers.

Erika

[Rafiki]

Maisie,

Hang in there. I had no problems at all until June and I became bed-ridden practically overnight. My heart-rate is about in the same range as yours and it was pretty scary. My blood pressure dropped more than 20 points as well which made me very dizzy. Midodrine helped with the blood pressure and some with the Heart rate. Today my heart rate still fluctuates dramatically and I get short of breath just walking around the house, but I am pretty much back to my normal lifestyle. I do have to rest a bit in the afternoons when possible, but I am working, driving, shopping, etc. I've modified things-Work from home some, don't shop all day, can't stand in long lines, etc, but I'm not in bed all day or in a wheelchair.

When I feel my heart rate getting too fast or too slow I either sit down or move around. I don't worry about it though and I think that is the biggest help. Early on I was worried because I didn't know what was causing the high heartrate and if I was in danger. Then I was obsessing about it once I found out it was POTS. Now I know that although bothersome, it is not life-threatening (just life altering). I just make the necessary adjustments and try not to feel sorry for myself. I also try not to obsess over it.

POTS varies from person to person and from season to season for each person. I wish you all the best as you begin this journey.

Debbie

[Maisie87]

Thank you all for the support.

My ENT appointment was interesting. . I wanted to rule out vertigo or any inner ear problems that might be contributing to my extreme dizziness.

After learning that the dizziness began after two severe concussions two years ago (that was the beginning ofPOTS for me- concussions were from a near drowning rafting accident and a car accident 6 wks later), the doctor said it's possible I damaged my inner in the accidents. He gave me a really long word for it.. started with Ph but I don't remember. . He wants to do a CT of my inner ear (didn't know that was possible*) and a few balance tests. Soo we'll see how that goes I guess.

As for the Florinef, I didn't respond to it well.. made dizziness worse, really fuzzy thinking with headache and head pressure, nausea. But I've read that licorice root has a lot of the same benefits as Florinef. Any of you tried licorice root?

I'm learning that this process is trial and error.. frusterating but necessary. I'm also learning that new symptoms surface weekly. From what I've read on the forum, this is normal.. My blood pressure started doing this strange thing- the gap btw. systolic and diastolic is large, 55+. I notice I'm feeling especially lightheaded when there is a big spread btw. the two numbers.

I hope you all have an "up" day today*

thanks for listening

maisie