Tessa update

[Tessa]

Hello my dear friends.

I am sure you know that I have been around, reading posts, following the board though posting less. I stopped talking about myself, at first because I was not feeling very well and later because I waited to have some good news to share...

Even though I would love to say the opposite, things have improved but not enough. I am not recovered yet and still have to face some health issues which are not easy for my husband and me. But at least I have a diagnosis, which has been extremely difficult to achieve. I would say it has taken my whole life to know what´s going on with my health...

I am prepared to share it with you and I hope you feel free to ask your doubts about it.

After some tests, one of them with a scary reaction-result (for the doctor and for me), I have been dx with POTS

For those who are afflicted with Orthostatic Intolerance, there is an excessive increase in heart rate upon standing, resulting in the cardiovascular system working harder to maintain blood pressure and blood flow to the brain.

Upright posture also brings about a neurohumoral response, involving a change in the levels of vasopressin, renin, angiotensin and aldosterone levels - all of which are involved in the regulation of blood pressure.

Any disruption in any of these processes, or their coordination, can result in an inappropriate response to an upright position, and can lead to a series of symptoms, and may include syncope.

It can increase or decrease blood pressure...

If you wonder what POTS means, please, take a look to the following website:
Pots overview

POTS is a disautonomia - an
Autonomic disorder

It has been extremely difficult because I had such a wide range of symptoms but now we know that most were usual for POTS and/or for Celiac.

Although the Cardiologist has been able to control my high heart rate by means of a betablocker I have been struggling with my very low blood pressure and still cannot get it up but at least it has stopped from decreasing since I am taking Licorice Root. It keeps at 80-40 now. (still too low):sad:

I have been told that a blood pressure below 90-60 for too long is too low and might be dangerous for tissues and organs, because of not getting enough blood to function...

I cannot overwork, carry out the homework, get some homeshoppings, etc. without feeling exhausted, with chest discomfort, breathing problems, dizzy, lightheaded, etc.
Thanks God my work has to be carried out while I am sitting, because I can still cope with it unless I am not standing up...

Thank you for reading my post and taking your time to know more about POTS. Your support and suggestions have always mean so much for me, that I really thought I needed to share this with you.

Take care,
Love,
Tessa

[barbaranoela]

Tessa-----
I dont know what to say to you---- the right words escape me but I want U to know how sadden I am to read of your diagnosis --

I read some of the articles --and I for U----and its because I cant imagine getting this news----

What can be done for U? other than what U are doing now???

Know that U are in my thoughts and prayers--

Tessa, Maggie also runs very low in pressure too--perhaps she can relate her issues with U----

Take care---stay strong
try to keep a
Luve U dear sweet Tessa--

[annie oakley]

Wow Tessa....We sure have missed you while you have been away. Sorry to hear of the diagnoses. Have they put you on any meds or have a solution to help you? Love Oma

[Carol Arnett]

Oh, Tessa....I am so sorry to hear that you have such a debilating disease. Please know that I will be praying that the doctors can find the right medications to make your life more tolerable; or better yet. a cure.

I will also be praying for you and your family. Some things are so hard to go through alone. Love, Carol

[tex]

Hi Tessa,

Thank you for the update. POTS is a difficult condition to deal with, but now that you have an accurate diagnosis, at least now you know what is causing your problems. If we keep our eyes open, hopefully, a suitable treatment will be found. Somewhere, there is a solution - we just have to find it.

Love,
Tex

[JJ]

Tessa...Tex is right, somewhere there is a solution...hang in there kiddo...Love, Jill

[Lucy]

Hi Tessa,

I'm sorry to hear you are going through this.

My mother has autonomic dysfunction in conjunction with the Parkinsons Plus syndrome she has.
We had to take her to a cardiologist who specializes in these kinds of things for recommendations a few years ago. He is called an electrophysiologist.

You might want to find out who, in your area of the world, is considered to be a really good one of these, if you've not already gotten the opinion of one of this kind of superspecialist.

Once we got his opinion, either her regular cardiologist or internist was able to prescribe it here in the USA, but you can find out there whether or not your primary care doctor is comfortable prescribing those types of medications if they are recommended.

One thing that we discovered that came in very handy for Mother while she was walking, was one of those walkers with wheels that has a seat to sit on. This was as long as Mother had enough warning that her BP was getting too low, so that she had enough time to pivote around, turning her back to the walker seat in time to sit down on it before she passed out.

This may seem like an extreme measure at your present age and apparently otherwise good condition, but at least these things come in fashionable colors nowadays. Mother's had frequent admirers who'd ask her where she got hers! Ha! Some fold up more than others if your trunk space is limited. Also, door opening size can be limiting in terms of width of the walker.

One can find these with brakes built into the areas just able the
wheels such that they will stop when you put your weight on the handles while you are walking. Also, they come with hand brakes.

When Mother began to require one with a wider base of support, she made the transition to one with handbrakes pretty easily.

Some of these also have a little removable basket (about purse size) under the seat or on the front, so that can come in handy. Or, one could make a cloth carrier and tie it to the front or perhaps buy one, sort of like the ones you see on the backs of wheelchairs. This way, your hands can be free to hold onto the walker while you walk.

Once Mother would sit a few minutes, perhaps with her head down, she'd be able to continue walking for a good while without having to sit again.

I'm sure you already know that getting up from a sitting or lying position, particularly after being there a long time, like getting out of bed in the morning, are times when you are particularly vulnerable to the pressure drops.

Other times are after you've taken a medication known for lowering one's blood pressure as a side effect, and after eating a meal, particularly if you are sitting there a long time, like in a restaurant, visiting with people.

Another thing is getting up after a BM or vomiting.

It gets complicated at times separating out these activities so that they are not additive.
For instance, since so many medications are taken with meals, one could easily be having a meal, sitting a long time, and while there, pull out your BP lowering medication, and not leave the table until the medication had had time to be in your system. Also, it wouldn't be uncommon for you to have to visit the bathroom for a BM after eating a meal. All these factors could really add up, making it much worse than any one factor by itself, so your chances of fainting would be greatly increased.

Mother has been on two different kinds of medications for the hypotension, but since her PD is to the point that she's not out of bed so long now, and is no longer ambulatory, we've been able to get by recently with just the short acting medication which we give her right before we get her up with the Hoyer Lift.

Since the first thing we put her on with the lift is her potty chair when she is supposed to have her BMs, we first sit her straight up in bed with her feet off the side of the bed, and once she's stable there (we monitor her BPs all the way through this procedure) I go ahead and feed her by mouth.

Since a meal tends to drop the BP, I don't get her up to the commode right away, particularly since she also has to stand a few minutes with LOTS of assistance, in order to adjust things, before transferring her to her wheelchair with the lift.

Right now, as soon as she's eaten that first meal, and maintaining her BP's adequately, I go ahead and give her her vasoconstrictor, and give it at least 45 minutes to work, although it may not even take that long, before getting her out of bed to the potty chair, etc.

Once in the wheelchair, her BPs, although not high, by any means, seem to remain stable. Tonight, her BPs seemed a bit high, though not more than the doc said would be ok, so since she has a hospital bed, I simply have to raise her head a bit more.

As you can imagine, for a person who is independent and functional like you are, it just would take a little bit of planning to separate out these BP lowering events so that they don't all happen at once, and knowing when to take precautions, etc. Regardless, it's still no fun, so I really feel for you.

Please PM me to let me know what your doctor recommends. I would like to know more about what led up to all this, if you don't mind.
Can't help but think that all this is somehow related to our other autoimmune condition. Maybe someday research will prove this. We'll see.

Take care, Tessa.
Yours, Luce

[MaggieRedwings]

Morning Tessa,

So sorry to hear that you are faced with such a condition but to have a diagnosis finally is a blessing. Hard word to use but always wondering and never knowing just makes things tougher. Thank you for the link and I am headed there to find out exactly what POTS is all about. My BP is proverbially low and I have artrial tachrcardia (sp?) in the lower chamber of my heart and get the dizziness and somes wooziness upon standing. If they could totally pin this down for me I would be thrilled.

Do what your doctors say and keep us posted.

Love, Maggie

[Tessa]

Thank you for caring, my dear friends Barbara, Oma, Carol, Tex, Jill, Luce & Maggie

Barbara, it might seem harder than it really is. Others having POTS are far worse than I am and I have to thank God that I am still able to walk and enjoy a seemingly normal life.

Oma, my Cardiologist has prescribed some meds. First of all a Betablocker - which has been very useful to control my high heart rate -
One of the problems was that I had a very high heart rate most part of the day, even while I was sitting. Therefore, every single and slight activity was a nigthmare, exhausting and possibly dangerous for the already extra-working heart. Furthermore, the more time standing, the higher the heart rate. With the betablocker it has become stable at 60 bpm.

Carol, thank you for the prayers. They are welcome.
Besides the betablocker to decrease the heart rate, the Cardiologist wanted me to have Florinef, because it increases the blood pressure.
Unfortunately as all you know I am intolerant to casein and Florinef has lactose.

In short, the 2 drugs specifically used to treat a low blood pressure without too many side-effects are not sold in Spain and/or include lactose.

Of course we (The Cardiologist, myself and my husband) have been frustrated.

Licorice Root is not a drug, but was the only last option we have.

My dear friend, Tex. We also thought that having a diagnosis would be the most important part of the problem... Up to now, a cure is not possible but I also hope that there will be something, someday... Thanks for your always possitive support.

Unfortunately, POTS is unkown in Spain and my Cardiologist, even though he is really willing to help, has no idea about it. I have given him a lot of information (translated into Spanish) for him to read about it, but I do not think he has read it all... At least he carried out the Tilt Table Test in order to determine what was wrong with me, when others did not bother and that is one of the main reasons for going on with him... How do you say? Known better than the unknown?

Thank you for your support, Jill. We have to keep the faith.

I hope you are fine, Maggie. Thanks for sharing.

Luce, I am so sorry for your mother and you. It must be very difficult to handle.
Thanks God I do not pass out. I can feel most of the symptoms - lightheaded, dizzy, chest discomfort, etc., but do not faint. I used to faint when I was a child and a teenager and twice or three times as an adult, but that´s years ago...

My last faintings were after an inyection (because of a reaction to the drug) and at the Tilt Table Test, when even the Cardiologist scared to death, because I was not gaining consciousness after laying down...
The passing out event at the Tilt Table Test took place - not because of keeping standing for too long, as they did not wanted to wait - but because I was given " nitroglicerine.

Some minutes after having been given the nitroglicerine I started having brain fog and fainted.

My heart rate was: 50
And my blood pressure: 64-26

Yes, you read it right... 64/26
(Althought I am not sure if these are the lectures after gaining consciousness)...

It was not scary situation, because even though they immediately put me down... I did not regain consciousness (at least not easily). Both the nurses and doctor were worried and she shouted at me repeatedly. My husband could hear them from the other side of the door and was worried too... Something I would rather prefer not to experience anymore.

I agree with you when saying:
but think that all this is somehow related to our other autoimmune condition. Maybe someday research will prove this. We'll see.

"Funny", but what scares me most of these faintings and low blood pressures is having an additional problem with some drugs and not being able to know which ones and that the next reaction could be more serious.
I know, because I have been informed (on POTS PLACE, the previous page I linked), that people with POTS do have reactions and hypersensitivities to drugs... But I cannot avoid feeling worried.

Thank you all for your time reading this long post. Thank you all for your thoughts and prayers and for your support.

[tex]

Tessa,

Back when you first discovered that the Florinef contained lactose, I suggested, (in a PM), that you might be able to take it anyway, without any adverse reactions, and if I recall correctly, I suggested that you ask Dr. Fine, or your doctor, for their opinion on this possibility. I don't know if you consulted with either doctor about this, but since there don't seem to be any other treatment options at the present time, I have been studying this option, again.

It has been a long time since I have had any chemistry courses, but I have been reviewing the way that casein and lactose are separated from milk, and I am pretty sure that commercially-produced lactose does not contain any casein, and it probably does not contain any of the other proteins found in milk, either. Here is a good chemistry reference on these separation processes, if you want to review them:

http://www.chemistry.mcmaster.ca/~chem2 ... exp11.html

Unless you are lactose intolerant, I see no reason why the commercially manufactured Florinef would not be safe for you to use. Even if you are lactose intolerant, the reaction to a sugar, is quite different from a reaction to a protein, such as casein. What would happen, if you are lactose intolerant, is that the lactose would not be digested in your small intestine, (due to the lack of lactase enzyme), and it would pass into your colon, where it would be digested by a fermentation process. The fermentation process will produce some gas, (that would not be present if it were digested by the enzyme lactase, instead), but it should not produce any inflammation, unless you have a problem with bacterial overgrowth. Anyway, the point is that lactose intolerance should not cause a microscopic colitis flare, though it is possible that it may cause diarrhea, if you are significantly lactose intolerant.

I suggest that you ask a very well-trained pharmacist, for his or her opinion on whether or not there might be any trace of casein present with the lactose in the Florinef. I don't see any reason why it should contain any casein, and if you are not lactose intolerant, the lactose shouldn't bother you in any way. I'm not a chemist, so that is why I am suggesting that you ask an expert. Apparently, many MCers are lactose intolerant, while they are having an active MC flare. However, I suspect that in many cases, once the gut heals, then they are no longer lactose intolerant. This is true of celiacs, also. In fact, even a stomach virus can cause temporary lactose intolerance, but once the virus stops causing symptoms, (and the mucosa of the small intestine recovers), then the lactose intolerance disappears, also. Do you know if you are lactose intolerant?

Love,
Tex

[mle_ii]

Tessa,

I'm curious have you had your sodium levels checked? If so what were they?

Tex,

Yeah, I'm thinking that the bacterial overgrowth was the cause of my lactose intolerance, I've yet to try milk again, but I will once I'm done taking the antibiotic and have taken a probiotic for at least a week or so without problems.

Mike

[Lucy]

Hi Tessa,

My mother was on Florinef for a long time while she was still walking.
She is sensitive to gluten, but not to anything else that we know of, like my sister and I. Of course you know the side effects of Florinef -- swelling. I would imagine that not being diagnosed with g.s. until in her 80's, that she would have a degree of lactose intolerance, yet she's never had any diarrhea while on the Florinef.

Actually, she had started out with Midodrine which is the vasoconstrictor, but since she'd stand up at any time without telling us, particularly as the medication began lasting shorter and shorter periods of time, she would inevitably fall during the wear off or in-between-doses period, so this was why we switched her over. Of course, with the vasoconstictors, like Midodrine, the extremities don't swell, but there's less circulation, so they get particularly cold.

Once on the Florinef, we monitored her and monitored her BP's around the dosing times and significant other activities until we had her at the optimum dosage to keep the BP's from going too high after she'd lie down, and yet stay high enough such that she could pop up (PD'rs aren't supposed to be able to "pop up" but she did it!). Eventually, we had it down so well, that we didn't have to take the BP's nearly as often, and nothing like as often as with the Midodrine, so that made it much, much easier for her to get around for as long as she was able.

What was really strange was that she had a period of being completely free of the meds for a number of months after having it for a few years.

Just so happens that one of the support group leaders for the so-called Parkinsons Plus syndromes, including the ones with the autonomic dysfunction like my mother has, told me a while back that the folks with this particular dysfunction report extreme sensitivity to various medications.
This has been our experience as well, so I guess it's true, regardless of which type of autonomic dysfunction one has.

Another thing with Mother's type of illness is that there's a sort of eb and flow to it. Sometimes she just gets better for no obvious reason that we can tell.

By the way, was Midodrine the other medication that you weren't able to get over there? It does seem strange that there isn't some way to get whatever one needs through some lawful procedure. Perhaps it's just a matter of knowing how to get through government buracracy. Perhaps you could contact some elected official to find out what to do or how to get things changed.

What, if anything, was mentioned to you about how much fluid to drink each day, and what your table salt intake should be? Just curious?
I suppose it would be different, depending upon which medication you were put on.

We just keep working to tweek Mom's regime as we go along, optimizing the benefits of her meds.
She never seems to be on much of anything for very long, it seems, unlike most of the classic forms of PD.

If you can find one over there, those small wrist BP machines that fit on one's wrist are really easy to carry around in your purse while you are getting to "know your body" in terms of this dysfunction.

You'd need to have it checked against your doc's mercury one to see how much yours is off, or else checked with someone you know has an accurate machine. If they are too far off, or especially if they are inconsistent readings, you would, of course, want to exchange it at the store.

We've had an Omron for years now, and all you have to do is change out the small batteries every now and then, but not often, and these aren't even Lithium batteries.
If you kind of know to expect the upper no. to be a few mm too high or low within your usual range, then sometimes you can just add or subtract that amount in your head, and have a pretty ball park idea of what your BPs are doing for every day observing. Nice thing is that youk don't have to have another person take the BP for you, and you don't have to remove a long-sleeved garment, etc. Perhaps someone you know can recommend a brand that they've been satisfied with that goes around the wrist.

I remember reading about POTS when Mother first got this tacked onto her PD diagnosis to put her in the PD-Plus category of diseases, so that's when I read most of what I read about it. Now, I need to go back and read some of this material online again. Thanks for the references.

Main thing is to be take precautions about falling. One thing one can do, just in case, is to try to stay next to a wall, and if one gets too dizzy, sort of slide yourself down against the wall. You can probably thing of other ways to protect yourself from straight out falling if you give it somethought because you never know when the BP will drop more than usual.

Think of it like we did when we had active diarrhea -- used to look around to find where all the bathrooms are in any new place.
With the hypotensive episodes, look for chairs, or if none, at least soft places to fall, and ways to slow down the falls, should they be about to occur, possibly. Wouldn't want you to get a serious head injury along with everything else.

Let us know anything else you find out, please.

Yours, Luce

[Tessa]

Hi Wayne,

Thanks for your long effort to help. (Always most helpful and willing to help)

With regard to:

Back when you first discovered that the Florinef contained lactose, I suggested, (in a PM), that you might be able to take it anyway, without any adverse reactions, and if I recall correctly, I suggested that you ask Dr. Fine, or your doctor, for their opinion on this possibility. I don't know if you consulted with either doctor about this, but since there don't seem to be any other treatment options at the present time, I have been studying this option, again.

I had to tell you that when you told me, I was going to ask Dr. Fine, but noticed that he mentioned on the Test Results that because of my intolerance to casein I should avoid all kind of milk products.
I even mentioned your doubt (and mine) to Polly and she said I had to avoid it.
It seems that it would have been different if my sensitivity was to lactose instead to casein, but that having it to casein I should avoid milk products, including lactose.

I have read your post and the link, but I am not a specialist and I got confused with all the terms and information. I wish I understood more.

I have not tested for lactose. I really thought it was not needed, as I had to avoid all milk products... Of course, I will ask our pharmacist on our next visit. But we had this conversation already when the Cardiologist prescribed the drug... I will try again.

Thanks for your support,
Love,
Tessa

[Tessa]

Hi Mike,

Thanks for answering to my post.

I have not had my sodium levels checked for a long time. In fact, I have been to my GP today and asked for a blood test.

Because it is highly possible that I have hipovolemia, the GP wrote a note to explain that I should have IV saline solution after the blood test, if I have hypotension (which I already have the whole day, without the blood test).

Once I have the blood test done, I will get the results in about 15 days. Will keep you updated.

Love,
Tessa.

[Tessa]

Hi Luce

Interesting post. Thank you for sharing your experience.

Yes, Midodrine is the other medication that we cannot get. It is not sold in Spain and I can tell you that burocracy is impossible. We talked about it with the Pharmacist and he said that it could take more than 6 years to get a new medication sold, if approved.
Even the Cardiologist said it was better to look for something different... But ran out of ideas. It was us (my husband and me) who investigated and got to the Licorice Root, which is used as Florinef...

What, if anything, was mentioned to you about how much fluid to drink each day, and what your table salt intake should be? Just curious?
I suppose it would be different, depending upon which medication you were put on.

The Cardiologist has mentioned to drink plenty of water (around 2,5 l. a day) and to increase my table salt intake. That´s all. No amount of salt.
Furthermore, salt tablets are not sold in Spain...

When I visited the GP today and talked about the blood test, I showed her my low bp readings and mentioned my reaction to the last blood test (similar to a hypovolemic shock). She suggested drinking extra "gatorade" some days before the test and has given a written "prescripcion" for me to show at the blood test stating that I should be taken to the ER after the blood test if I had hypotension, in order to get a IV saline solution.
That´s better than not having nothing after the blood test and suffering many different (and scary) symptoms.

Because my husband knows how to check the BP with the same machine doctors use, we bought one and have it home.
We checked it yesterday. 80-40 again.

Do you mean there is a kind of watch to check the BP?

Glad to be of some help with the references I posted.

As I mentioned, I do not faint but your suggestions are welcome. One never knows, having my bp so low all the time, (not hypotensive episodes, but 80-40 the whole time) fainting can happen suddenly... You are right, I will have to take some precautions. Excellent suggestion, Luce.

BTW, I have asked for an app. with an allergologist in order to determine my sensitivities to some medications, such as local aenesthetics,etc.
She told me that it can take some months to get the app. , but it´s worth waiting.

Thank you for caring, Luce,
Hope that your mother is better now.
Take care,
Love,