Tessa

You are not alone. I feel exhausted after having a shower or washing my hair. Blowdrying on the same day of a shower is just impossible.

I have tried to organize myself by having a shower one day (without washing my hair) and washing my hair another day, when I am feeling better... I do not dry it completely anymore as I cannot stand the heat and the effort.

Now in the summer, I just leave it drying by itself.

Hope this helps,

Love

Tessa

First of all, thank you for all your answers, suggestions, comments and for sharing your own experiences.

Of course, Pat, I have never doubted to share the information I got with the alergologist. It was just that I wanted your comments before. The forum has always been most helpful and supportive.

I have not been able to know if Novocaine was given with another drug other than "Celestone", Martha. No idea if it was epinephrine as you have mentioned.

Thank you, Melissa. .

I see from all the answers that most (or all) agree that the testings would help us determine exactly the allergies and I agree with you and others, that I have to show the doctor (who is going to carry the test out) the information I got from the other Hospital. I am sure he will know what to do with the information. He was, indeed, nice, Melissa and I liked him.

He thought that the testing was a good idea. Furthermore, as I mentioned before he added that he was sure that I have an allergy to PPD which we will confirm with the TRUE patch testing.

BTW, as I mentioned before, Novocaine was not the only drug that I reacted to.

Flop, I had some of the reactions that you mention on another ocassion (but we could not find the trigger): swelling of lips, tongue & throat.

Furthermore, after the Nitroglicerine I had a syncope & very low blood pressure: 64-26

In relation with Novocaine (years ago), I do not know if the local anesthetic contained Adrenaline. I wish I knew. I imagine that the doctor will determine it with the tests. Thank you for mentioning it, Flop. I will tell the alergologist to rule it out too.

Thanks for the information, Maxine. Sorry for your reaction to Lidocaine. Toxic is another option... I will keep it in mind to ask it.

Julie, I will try to tell you how it happened, although this was years ago. After the inyection of Novocaine at the doctor?s room, we went to the information desk at the entrance of the Hospital in order to ask for another ap. It happened really quick.

I had flushing, lightheadness, brain fog, a rapid heart beat (I felt my heart beating hard and fast), chest pain that became accute and then syncope.

According to what my husband told me later, he had shouted for help and staff from the Hospital brought a disabled wheelchair. He runned to the doctor?s room (where I had the inyection) and asked for help to the doctor. I was taken straightaway to the ER by the doctor and my husband (though my husband was not allowed to enter). It seems they were all very scard and worried.

I was still withouth consciousness.

When I woke up, I was lying in a bed at the ER.

I really cannot assure that the ER?s internal report states the use of TIMOLOL, because as I mentioned before it is not very clear and it seems that they have written TOMOLOL IV but Tomolol does not exist, does it?

I am afraid that the report might not be of much help to the alergologist, because it does not include enough information and it is not clear...

On my copy of the ER?s report (given on the day of the emergency) is written that I had an allergic reaction to a local infiltration, and it mentions the use of Novocaine and Celestone Monodosis (as infiltration).

Regarding the reputation of the allergist who is carrying out the tests... I really do not know.

Our Health System does not give us the option to decide the doctor we want. When I told my GP that I needed an allergist to carry out some tests, he allowed an ap. with an allergist at the nearest hospital. The allergies department at the Hospital counts with a team of allergists who treat patients. There are plenty of rooms with allergists and on the day of my ap. it was him who was available for me... I even do not know his name as I do not know if he will be the one to carry out the tests on the day of my ap. in September or if another one will be available...

According to what he mentioned, he pretends to try the drugs that I am supposed to have an allergy to (at a lower dosis) and will increase the dosis step by step, to see the reaction.

Julie, you have expressed my real concern. I read it too, that you do not re-expose a person to a med that caused an allergy, because there are more possibilities of a bad reaction.

Here they use to test an allergy to gluten by re-introducing gluten to a diet in order to see the patient?s reaction... I think you know what I mean.

To what I know by now, I had reactions to Novocaine, Dolantine and Nitroglicerine.

I am also looking forward to Doctorguest?s comments on this experience.

Thank you all for your answers and support.

I deeply appreciate them,

Love,

Tessa

PS:

I forgot to mention what happened last night. Am I becoming more sensitive?

I woke up at about 5 am with an extremely itchy feeling on my left arm and hand. One of my fingers was red and I thought it was because having scratched myself sleeping...

At 9.30 am, we woke up and my finger was swollen. Part of it was red. I had an itchy feeling, pain and was unable to close it.

We ended going to our nearest Chemist.

It seems to have been a reaction to a normal mosquito bite.

I never had such a reaction to a mosquito.

They gave me hidrocortisone (Cream). It is better now, the redness has dissapeared, and it still a little swollen.

Have you had this reaction to a mosquito?

Hi Pat

Congratulations!

Having time to sleep is very important. You will feel much better and stronger for work.

Love,

Tessa

Hi

I am sure that you remember that I mentioned on a previous post that I am going to be tested for a wide range of allergies, among others to some drugs (anesthetics...)

The first reaction I had to Novocaine (a local anesthetic) was long ago and took place after having a local infiltration of the drug.

After passing out I ended at the ER.

They mentioned on my ER?s report that I had an allergy to local anesthetic inflitrated... But we thought it was not important, until further reactions to drugs happened...

I had an ap. with the alergologist and he is going to carry out some tests next month in order to determine if I am allergic to local anesthetics. He asked me about that first time that I had such a reaction but I had not much information, as on the report the treatment section does not specify if they had to give me a drug or if I gained consciousness by my own, which is what we thought and were told at the ER.

My husband was not allowed to enter with me into the Room at the ER and I passed out, so I did not know if they had done something to recover me...

Furthermore, we suspect that the ER?s report has been "modified". The bp is stated as 90/60, but the hr seems to have been written on a previous number written first...

According to my husband (because I passed out and did not see him), the specialist who carried the infiltration out scared to death when he got to his room to ask for help because I had fainted...

When I left the Hospital, the doctor said not to worry, as it was just a syncope, some sort of allergy he said- alhough he mentioned to return if I felt unwell...

Because the alergologist asked me to investigate the infiltration?s amount of Novocaine, I thought it could be of interest knowing what the doctors carried out at the ER.

I have not been able to get all the information (which is another story), but I managed to get a copy of some of the notes they wrote down at the ER (internal information). The Hospital has sent it to me by post, stamped by them (which is official).

To summarize:

I had an infiltration of Novocaine and had an allergic reaction to it.

At the ER I got intravenous TIMOLOL (to be honest, they spell it wrong on the form as TOMOLOL, but of course, TOMOLOL does not exist, but TIMOLOL does and is much more related to what we are looking for).

I have been surfing the net and found the following:

TIMOLOL (you can click on the link to read the full information. It is an official website).

Timolol maleate is a beta1 and beta2 (nonselective) adrenergic receptor blocking agent that does not have significant intrinsic sympathomimetic, direct myocardial depressant, or local anesthetic activity.

Indications and Usage for Timolol

Hypertension

Timolol maleate tablets are indicated for the treatment of hypertension. They may be used alone or in combination with other antihypertensive agents, especially thiazide-type diuretics.

Myocardial Infarction

Timolol is indicated in patients who have survived the acute phase of myocardial infarction, and are clinically stable, to reduce cardiovascular mortality and the risk of reinfarction.

Migraine

Timolol is indicated for the prophylaxis of migraine headache.

Of course, 90/60 as bp is not hypertension and I had no headache nor migraine so...

It is hard to say, but I think that I had an anaphylactic shock and (thanks God) they usted the best drug they could to recover me.

Wouldn?t that be enough to determine my allergy?

I am a bit worried because they plan to provoke such a reaction next month to see if I am allergic. Do you think I should go again through all the process?

I know, it is done at the Hospital and under the specialist?s close eye... With all the drugs and fittings needed... But what do you think?

Thank you for your help

Love,

Tessa

I deeply appreciate all answers, please. Can you help me?

Yes, I know what you mean.

I feel horrible when I am weak and exhausted and have to sleep for 12 hours and lay down most time of the day...

Thanks God, I am not suffering it everyday anymore.

Hope you can feel better soon,

Take care

Tessa

Hi Julie. Thank you for caring

Of course it will first have to be confirmed but it is good to know that they do prescribe the epi-pens right away. Thank you for telling me.

Ooops. Poor hubby, he had to stick it first! Did they explain how to use it?

Yes, a bit scary, indeed, but I prefer sticking it (If I need it) than having the reaction.

As I mentioned before, with Nitroglicerine it took me just 3 minutes to pass out (of course, I was standing too).

"It restores a normal rhythm to the heart". That?s extremely important, as well as if it restores

the blood pressure. Does it?

Wow! More than 200 pmb is a lot... I think that my reaction is just the opposite, my hr and bpm fall down all in a sudden... Though I cannot confirm it. I think that first, my hr increases and then falls down, because I feel my heart bumping quickly in my chest and it gives me chestpain...

Is anesthesia the only thing that causes a reaction for you? Will you be tested for other things as well. Knowing your triggers will make it much safer for you.

Well, besides the extremely itchy rashes that I have from time to time, the alleged reaction to PPD, being gluten and casein intolerant, having to avoid gluten and casein on cosmethics, cremes,... because I have a reaction that could be similar to HP, etc.

The most important and "could be" dangerous reactions are when I have been inyected Novocaine (local anesthetic)...

Another reaction was when I had to undergo an endoscopy with sedation. I was supposed to be conscious and collaborating with the doctor but I have been sleeping since soon after it was inyected and it took "a lot" to recover and awake. They even were unable to find my hr...

BTW, a few days ago I was finally able to be informed of the drug that they used: Dolantine inyected intravenously.

While having the TTT my hr was increasing and my bp was going down, but after 15 minutes tilted, the Cardiologist said he had enough and wanted to try with Nitroglicerine (sublingual).

I thought he would wait 45 minutes before trying with a drug but they said that waiting was a waste of time and... I had what was supposed to be a low dose of Nitroglicerine (sublingual).

After a while, I started feeling pressure in my head, uncomfortable, confused and a little dizzy.

According to the Cardiologist, the syncope took place 3 minutes after Nitroglicerine and his dx was POTS and/or NCS - Vasovagal syncope. (As he has no idea about POTS, he thinks that they are all the same)

It was obvious from his expression that the alergologist was not satisfied with the Nitroglicerine test, altough he did not mention it...

At least they will know when to use epinephrine, because I think that maybe the Cardiologist should have used it to help me recover... This time they will be prepared and knowing what they are coping with.

Thank you for your possitive thougths and prayers, Julie.

Of course I will keep you updated.

Love

Tessa

How interesting!

Thanks for sharing.

Love,

Tessa

Hi Julie,

You cannot imagine how supportive your post has been. It is a relief to know that you went through something similar, that it is useful and that they are extremely careful with us.

I saw the room where the test will be carried out and I agree with you that they have everything they could need close. It is going to be a very controlled testing.

Not only I am a little scared about the tests, which I am highly sure they will be possitive

(In fact, the allergist said that he was pretty sure that I am allergic to PPD... And it is more possible to be allergic to anesthetic if you are allergic to PPD... ) , but I worry if they will understand the importance of the allergy. Do you think I would have to beg for a epi-pen or do they prescribe it right away when you have a possitive reaction in order for you to carry it with you?

I had similar reactions to different drugs and if the allergy is confirmed, I imagine I will have to carry a medical alert...

I am sorry to admit that I am still a little scared about the test, but sincerely, sharing your experience with me has helped a lot.

It is indeed important to know if it safe for me to use anesthetics in the future...

Thanks for caring about me, Julie.

Love,

Tessa

Please, other comments, ideas and suggestions are still welcome.

Thank you for answering pat57.

It is always useful even if you did not have these tests done.

15 seconds? I do not know the time it took for me but they were really worried. My husband heard their screams from outside and was thinking to enter the room...

The Cardiologist was still impressed and nervous when my husband talked with him a few minutes later...

Of course, there is nothing written about this so I can only explain it to other doctors...

Love,

Tessa

Hi,

when I have chest pain and/or discomfort breathing, I usually try to rest more than usual, with my legs above and increase my fluid intake (as well as gatorade).

Take care,

Love

Tessa

I went to the Alergologist and mentioned all my previous and current allergies and/or reactions, plus the possibilities of having problems with (PPD) Paraphenylenediamine (Check to read more info: Dermatitis )

Of course, the most important issue is that I had an allergic reaction to a local anesthetic (Novocaine) some years ago.

First, he carried out the skin tests for the usual allergies (polen, acarus, etc) and sheduled another appointment for a longer test of 5-6 hours in order to check my allergies to drugs.

To test the Paraphenylenediamine and others, he has given me a T.R.U.E. test patch. Well, in fact 3 different TRUE patches. True Test information

As it has to be on the skin for 2 days, my husband will have to put it on my back 2 days before the appointment for the drug-test.

They will remove it at the Hospital on the 3rd day and check the results.

Then I will have to undergo the special long test for allergies to drugs, specially anesthetics. It is supposed that I could have had a kind of anaphilactic shock or anaphylactoid reaction anaphilactic info some years ago when I had an inyection of anesthetic... I had other reactions to different drugs later too.

Furthermore to all this, when I mentioned the TTT test and that I was given sublingual nitroglicerine and had a syncope 3 minutes later with a very, very low bp (he read the bp at my recovery)... He did not seemed to be happy about that...

We have always wondered why I do not use to recover promptly when laying down again, and it rather takes so much time to gain consciousness after that kind of faintings. Isn?t it supposed with POTS that you recover by yourself and quickly after laying down?

I guess he thought it could have been a reaction to the drug...

In fact, the Cardiologist scared to death after the Nitroglicerine because I did not recover for a "too long" time. Both nurses were shouting at me, worried, trying to recover me...

I think they already were thinking to inyect "something" to reverse the symptoms when I finally opened my eyes...

Of course I am not trying to say that I have no POTS, as I have it and I am sure that if the Cardiologist had waited more time during my TTT instead of just 15 minutes to give me the Nitroglicerine, I would have fainted, becase my hr was slightly increasing and my bp was getting lower...

My worries now are the allergic test to drugs... Thanks God it will be carried out at the Hospital, with special monitors (and laying down). But they told me I will have to fast from midnight and stop all my drug treatment 24 hours before the test.

I admit it. I am a little scared about it.

It is supposed that they will try the drugs (to which I had an alleged allergic reaction to), increasing the dosis until a reaction appears...???

BTW, I have read that the TRUE Patch test includes a "Caine Mix". ISn?t that an anesthetic?

OOPs!

I would appreciate any comments about all this. Suggestions, ideas,... Are welcome.

Thanks beforehand for your help,

Take care,

Love,

Tessa

Would you mind if I ask you not to listen to doctors who have no idea about POTS?

I did not wanted to be rude, but I know how much you care and worry about your health and symptoms and are aware of your hard work to follow a "normal" live... As many mentioned already, a high hr rate is a possibility for POTS as well as a lower one, both options are included...

Come on, you know it too.

Do not allow them to make you feel confused.

What would you think that Dr. Grubb would tell you?

If you can, avoid wandering from one doctor to another if they have not much knowledge about POTS.

Take care

Love,

Tessa

BTW: Ernie?s suggestion is a great idea too.

Hi

Welcome!

I am sorry that you have to be here but glad that you found us and that you are going to have such a wonderful specialist helping you.

It is very important to find someone who knows about POTS.

I am sure that you will the best help.

Yes, please, Keep us updated.

Love,

Tessa

I also can say yes to almost everything you said. Furthermore, I would like to add how Potsy I was feeling after singing... Yes, you read it right, not only laughing but singing.

What about dancing?

I loved dancing... It has been a long long time now... And I miss it, but it made me feel so sick, with nausea, vomits, headache, dizziness...

The last time I had that "Potsy" reaction to dancing we had never read about POTS yet... Of course, now I understand why it happened...

Love,

Tessa

Hi Angelika_23

I just read about your TTT. Oh, my God. I am so sorry that you had such a bad experience.

I agree with others that you do not need to faint to confirm a kind of Dysautonomia. Furthermore, you fainted, although after the test thus unable to check your heart and bp reaction to it...

Of course, medication can alter the results.

I felt bad for the whole day of the TTT and had to increase drinking fluids... (You can read my experience by looking it up on the forum. I will try to find it for you)

I have not been able to get a full copy of the test, but just a summery of it, not minute by minute. Maybe I should, because this way you can always show it later to another specialist... I am glad that you asked for it. Do not be surprised for them to be reluctant, I think that it happens everywhere. They were extremely reluctant too when I asked for it.

Doctorguest?s comments have been most helpful, as always.

Take care,

I hope that you are feeling better now

Love,

Tessa

Hi samemmycatsmom!

Welcome a board.

I have not been an athlete but loved dancing for hours with friends, walking a lot, beach-tennis and swimming. I was a basket player of the High School?s Official Team but had to stop it because I was unable to follow my studies at the same time.

At the same time, I started having some "strange" reactions while doing gym and my GP recommended to avoid it, though they did not investigate why I was feeling so bad, etc.

As Tanzanite, I think I had POTS all my life (in a milder form too). I have never been a strong person and it seems that I have had allergic reactions soon after birth...

Furthermore, I started passing out since I have knowledge (when I was 5 or 6 years old) and even though this does not happen now, other symptoms got worse over the time (no idea why). For instance, one day after playing beach-tennis I had a terrible headache, vomits, weakness, etc. The same happened after dancing on Christmas Eve at home with my sister in law...

Stairs make me feel really bad. My heart goes crazy, I feel exhausted, with chest discomfort, a racing heart (not so racing now with the Betablocker) and with breathing difficulties. (Not asma).

And it takes a lot for me to feel right again.

Welcome,

Love,

Tessa

Hi Lauren

I can tell you my own experience. My Cardiologist prescribed Florinef but because it is not sold where we live, we had to look for another option. I found Licorice Root mentioned on Dinet and suggested it to him, because I wanted him to agree first and get his supervision.

Before our meeting, we surfed the Net (a lot) and got all the information on doses, etc.

When we went back to the Cardiologist and suggested trying with Licorice Root he admitted that he had no idea about it (because it is not a medicine). Even though he said that it was a good idea to try as it was not a drug but more natural and we all thought it was worth trying.

With regard to the supervision, I thought he would control my electrolytes and doses, but as he had no idea, he asked me for the information I found on the Net about it and agreed to try 3 times a day, following the dosis mentioned by other doctors on the Net.

For the blood tests, the real supervision, he has told me to visit my GP and ask for the blood tests needed (the same as if I were taking Florinef), as well as the same precautions.

After taking it for less than 1 month, I went to my GP and asked for a routine blood test + to check my electrolytes. I will go back in a few months to get it tested again...

I hope this can be of any help,

Love,

Tessa

Licorice Root

Oh, that?s good news!

Thanks for sharing. I had no idea. I found the information I posted and thought we had no other option. That?s great!

I apologize for my lack of knowledge, but what does semi-permanent mean?

And will it cover grey hair?

it mentions:

Successfully covers mid-range grey

Mid-range grey?

Love,

Tessa

Hi Melissa

Thank you for answering

Yes, it is an improvement. I am looking forward to going to the beach this week (after work) and have a nice bath. I hope to swim a little... You did a mile! And lifeguarded! You must have some nice rememberings of it. It is wonderful to remember these kind of things.

I used to swim a lot before worsening, I was even known as the "sirene", because I kept swimming for hours and hours, but now I cannot keep more than 1 minute swimming. I feel so tired. And then the next day, all my muscles are painful. But of course, I do not exercise at all, so that must be part of the problem.

Cannot forgive myself living so close to the beach and not swimming. I can see the sea from the window where I am writing to you. The sea has such a wonderful colour. I have to try!

I will see if I am too tired tomorrow after work and If I am not, my husband and me will try having a bath in the sea.

You might feel better step by step and return to your swimming. Not as hard as you did before, but at least to have some fun swimming a bit. Never give up your faith, Melissa.

Thank you for your good thoughts. The office has been closed while I have been away. Imagine all the work waiting for me... Plus I have a new boss willing to do a lot of new things... I have to try my best not to stress and to worry... It is easy to say and difficult to achieve, but I will have to if I want to keep on being healthy...

Going back after a break is always stressful ... But I will do my best. (They have no idea about my health issues at work and I cannot share it with them because it would cause me problems)

Thank you for your being so positive, Melissa. Every little bit helps and your words are most helpful too.

Take care, it is nice to read your posts and see that you are feeling better. I hope that you are going better every day too.

Love,

Tessa

Tanzanite

I?ve visited their website and it mentions the following:

hese products contain ingredients which may cause skin irritation or allergic reaction on certain individuals and a preliminary sensitive test should be made according to accompanying instructions. Contains phenylenediamines & hydrogen peroxide. Not to be used for dyeing eyelashes or eye brows, may cause blindness. Avoid contact with eyes. Wear enclosed gloves & rinse hair after application.

Source: Naturtint

Furthermore, it does not mention to cover grey hair.

First I have to see the alergologist. Maybe he/she knows a tint that we can use. I will ask

Love,

Tessa

Hi Flop.

Thanks for your answer.

Yes, it is really a gift being able to do more things than before and feeling better.

I also agree that this is thanks to the combination of bisoprolol, liquorice, fluid and salt.

I never tried compression stockings but aren?t they difficult to wear in the summer? We are having around 35 degrees Celsius, sometimes even 38...

We have tried to swim a little the other day (on the beach) and even though it makes me feel tired, I enjoyed to be there. We are planning to repeat the experience in order to try to exercise a little. My muscles need it and as I am unable to exercise it seems to be the only way to exercise a little without feeling exhausted and with all the symptoms again.

We have never tried different doses of Bisoprolol because when I suggested it to the Cardiologist in order to reduce it, he refused.

I am on 2.25 mg. x2 (one dosis in the morning & one in the evening).

Thank you for caring about me, Flop.

I return to work on Tuesday. Just a little afraid of it but I think I will be able to cope with it as I am feeling better.

Love,

Tessa

Thank you, Flop. Most helpful

My blood pressure has changed a lot since I am on Licorice.

Do you remember that I have always mentioned having 80-40 ?

Nowadays my bp has been:

100-60

105-69

101-61

109-69

Serum Electrolytes on the blood test showed fine, except the urine potassium which was low.

Furthermore, most of the symptoms I had have disappeared and I am feeling much better than before, except that I have muscle weakness, cannot exercise and still become easily tired and dehydrated.

Two days ago, the elevator was not running and we had to use the stairs to get up home. When we got home I was feeling exhausted, dizzy, thirsty and completely out of breath. My husband scared because I was pale...

But in general, I am better.

Love,

Tessa

Hi Mary

First of all, please never forget that your condition is yours, not others.

Having access to knowledge should never be prohibited, but there is always a positive and a negative side of everything. This means that too much is not good for you and the contrary is not good for you too.

As you are only 15 years old, it will be difficult for you to know when to stop reading and talking about it and when to enjoy life without worrying about dysautonomia. (But, as mentioned before, we can never forget our illness because it is within us and we can feel it everyday... )

Being aware of when we are getting too far and are getting too involved is even difficult for myself (and I am older than you).

With regard to the information you read about POTS, it can be positive and negative for your condition.

A knive can be useful if you want to eat meat, but can be a danger if it is used to stab someone.

You can use the information you obtain to share doubts and learn from other?s experiences. But you can also feel down if you are not able to cope with all the information and know exactly how to manage it.

I can understand both positions, your mother (& doctor) and yours.

I am sure they want to avoid that you get too involved and worry, which can worsen your health.

Even though, may I recommend something?

Try to learn the most you can about your health condition. What can benefit you and what can harm you. Then try to enjoy your life by being aware of your body?s reactions.

There is nothing more important than knowing ourselves.

You are the only one who will know if this or that can worsen your situation.

Time will give you the answer as to when to return to the forum and to surf the net to read more about POTS.

You will know when to continue.

In the meantime, take care and enjoy.

We will be here, whenever you need some help and thanks for sharing your thoughts and doubts.

You are always welcome.

Love,

Tessa

HI LIndajoy

I have went through two 48-72 hours fasting tests. The first one was positive and I remember how I felt after fasting for more than 12 hours... My sugar levels went dangerously down and I had some "scary" reactions...

The second test was carried out not long ago and was negative.

Why it can change from one test to another? I do not know. But they said I do not have fasting hypoglycemia anymore...

If it is related to POTS or not... I wish I knew but I am sure it has to affect.

Take care.

Love,

Tessa

BTW, I found this:

BioMed Central | Full text | Circadian rhythm of the autonomic ...

- [ Traduzca esta p?gina ]

In the NGR group the dysautonomia is due to the effect of hyperinsulinemia, ... and of moderate hyperglycemia is directly implicated in the dysautonomia. ...

Source: www.biomedcentral.com/1471-2261/6/19

Hi Flop

The thing is that I do not have a specialist who really knows about POTS.

My cardiologist who carried out the TTT and who determined that I "faint" said I that I have POTS. His Dx was mostly because I suggested it to him by showing him the information of Dr. Grubb. Even though he said I had POTS, he added that there is no difference as the treatment for all are the same... I am afraid he did not read the full article to know more about dysautonomias, as he mentioned that it does not disable people... And that it can be avoided simply by not standing up to quickly, drinking plenty of fluids and adding salt to my diet... He wondered how I could be feeling so bad between episodes (without fainting) as it should not disable a person that much...

Well, he has not much idea about dysautonomias. He believes that fainting is not a serious condition and that there is nothing to worry about.

But, the thing is that he was the only specialist really willing to help and who bothered about my conditions. He ordered the TTT and carried it out himself (while at the TTT, he scared to death after my reaction but I mentioned it already on a previous post)...

He prescribed Florinef, but as we have no access to it in Spain, he agreed trying with Licorice Root. As it can cause the same effects as Florinef, I asked him to keep my electrolytes under control and he suggested me to visit my GP for future check-ups...

He said goodbye, told me to return if there was an emergency and said that I would have to ask for an ap in 1 year time - but added that it was likely that I would be given an ap. with another cardiologist by that time, as there are more than one, they have different times... And he was unable to promise that I would get the next one with him...

With regard to the renin-angiotensin-aldosterone system, I read about it being a possible reason of having POTS. Even Dr. Grubb suggested it on an article. It was said that a low aldosterone level can cause a low blood volume, inability to absorb sodium/potassium in the correct way, to balance the blood pressure, to keep the muscles fit (even the cardiac muscle), etc.

As I had been taking Licorice Root for a while, I knew I had to check my electrolytes and went to my GP to ask a blood test. I wanted him to check my renin-angiotensin-aldosterone levels too. But the day that I went to my doctor, he had the day off. A substitute was there and having no idea of my GP?s patients but willing to help and not to cause any claim, she agreed to everthing I asked and ordered the test. Even though, she added that the test was a very special one and was not sure if they would carry it out or if it had to be ordered by a specialist...

When the results came in, my GP had no idea about it being ordered, as well as no idea about what it is used for. He calculated the results into nanograms...and said that they were low (which is already remarked on the results page issued by the Lab.) ... And changed the subject of our conversation...

The Laboratory only checked aldosterone levels, not renin & angiotensin...

And that?s the story.

I am feeling helpless now, because I think I have found something important with relation to my POTS but I have no specialist to help me.

Again alone. With the help of my husband, but both alone without a way to know what our next step should be or what a specialist would do now having these results.

After reading the information on the website I published on my previous post, It is clear that having a low aldosterone level is important but, what can we do now?

Thank you for your answers. You are being a great help and support, Flop

Love,

Tessa