Bad experience with alcohol

I thought I would write this as a blog page not only to share my experience with you, but to also to remind myself that next time I want to have a few too many wines, then to think of the consequences.

Before I was diagnosed with pots I will openly admit that I liked to have a few glasses of wine a week. But since I have been diagnosed with pots I have not really drunk at all, except for the odd half a glass of wine.

So on Thursday I went to do my shopping and noticed that my favorite wine was on special offer which is a very rare thing, actually since I have had pots all my favorite wines have had special offer deals which have slowly been tempting me to purchase them. So I decided that I would buy the wine and I could keep it the fridge for when I had friends over.

As I sat down in the evening I remembered that I had the wine in the fridge so I thought I would have a small glass and that would be it. But that one glass turned me greedy and that glass turned into 3 glasses, I know I am very greedy.

After I finished the 3^rd glass I realised what I had done and tried to drink as much water as possible to try and re hydrate myself.

This did not work the next day when I woke up I felt horrible and not the normal hangover horrible. I was really dehydrated and felt really sick and dizzy I’m telling you guys it was completely like no hang over I had ever felt before.

I’m not going to say that I will never have a drink again but what I will say is that I will stop at one or two .and drink a lot of water in between.

Has anyone else had any good or bad situations with alcohol if you let me know  

Awareness for Postural Orthostatic Tachycardia Syndrome petition

Hi guys one my pots friends on face book has started a petition online to make the government be more aware of pots and  for doctors to be given more funding to do  more  research on pots . 

I feel this is a great idea and agree that there is not enough awareness about pots. Once when i went into hospital i had to actually explain what pots is to a doctor , which is a joke!!! The person who started the petition has been into A&E over 250 times which is unacceptable.

So please sign the petition so we can help bring more awareness about pots. 

here is the link to sign online
http://epetitions.direct.gov.uk/petitions/53773

Medication to help pots symptoms

Pots Medication

In my one of my pots blogs, I said that I had tried a variety of different medications to help control my pots symptoms. As the last one I was on didn’t have any success, I decided to do some research on different types of medication that are available to POTS suffers. One of the most important things I have learnt while researching the different types of pots medication is that; there is not actually any medication that has 100% been approved for POTS. Doctors have found that medication that is used to help with the effects of different illness can actually help relieve some of the symptoms that we POTS sufferers get. These drugs can be a huge relief to some pots suffers, and help them live a normal life. I have not mentioned all the drugs that can be used to help pots suffers, but have picked the main ones that are mentioned on the pots Facebook, as they seem to be the most used ones. While I have done research on all the drugs, talk to your doctor if you are interested in taking any of them as they will know the full benefits and side effects, as well as if this drug will benefit you

Ivabradine

I have started with this medication as it was the first drug that I was given to help relieve some of my pots symptoms, it is a popular drug with many UK pots suffers and has helped many people.

Ivabradine’s main use is to help prevent heart angina and to treat heart disease. It can be used to help Pots suffers as it slows down the heart by just a few beats per minute. When the heart is racing Ivabradine can help bring the heart down just a little bit which can help the efficiency of the heart pumping blood around the body. This can help relieve dizziness or the light headed feeling that many pots sufferers’ gets. Ivabradine is also a good alternative for people who cannot tolerate beta blockers.

As with any medication there can be side effects with this drug and they can range from headaches. Which people can get in the first month, to dizziness and blurred vision, among others.

I was prescribed 2.5 mg of Ivabradine and found that It really helped with my chest pain and did make me feel a little less bit dizzy but  after 2 weeks of taking it I was told to stop for the mean time as it was lowering my heart rate,  which for me has been a problem with many drugs. I do think that this is a good drug and I hope that in the future I will be able to use it again

Midodrine

This drug is used to treat people who suffer from low blood pressure, which many Pots suffers do. This drug helps by stimulating the body’s nerve endings blood vessels, causing the blood vessels to tighten, which in effect increases blood pressure. This allows more blood to flow to your heart and brain and, will help relieve symptoms caused from low blood pressure, such as dizziness and fainting.

Midodrine has previously been removed from the drug market. This is due to Shire plc, the company who manufactures Midodrine, failure to complete certain clinical studies; however it has been reinstated in the market due to the drugs benefits.

The most common side effects of this drug can be headaches, heart beat awareness, chills and Goosebumps, amongst other symptoms.

I have never tried this drug so I asked some of the pots sufferers on the Facebook page how they found this drug. most of them were really happy with the drug and found it gave them a better quality of life however some said that they had to be taken off the drug due to not ‘taking’ to the drug. I would actually like to try this drug as it seems it can be useful and help control some pots symptoms.

Beta Blockers

Beta blockers are used to treat a number of different heart problems such as preventing angina, lowering blood pressure and helping to control abnormal heart rates and rhythm. There are many different types of beta blockers such as atenolol, bisoprolo, and toprol. The medicine works by blocking the transmission between certain nerve ending and these stops the receptors from being stimulated, this then helps slow the rate the heart beat down when it is racing. Some of the side effects of this drug is that it can make the heart rate turn bradycardia (which means it goes rather slow) which in effect can lead you  to feeling more dizzy and faint.

I have tried Beta blockers, when I first went hospital, and only lasted on them a few hours; I was taken off as they lowered my heart rate into the 30s. I don’t feel like I will try this medication again as I had a bad experience while I was on it. But other pots patients have said that to them beta blockers are really useful. I would advise that if anyone does want to give them a try then you ask your doctor to put you on a low dose and see how this goes.

Florinef (Fludrocritstion)

Florinef can be useful to patients who have a low glucocorticoids, which are an important part of the body as they help salt and water balance which helps keeps a person’s blood pressure stable. It can help pots suffers as well as most of us suffer from low blood pressure. Florinef helps the kidneys to retain more salt which helps your kidneys converse water. This can help pots suffers feel less light headed and dizzy, which I can imagine would come as a massive relief, and help improve any pots suffers life.

The side effects of this drug are swollen feet and ankles, abdominal pain and difficulty sleeping. It is also important to talk to your doctor before taking this drug if you suffer from high blood pressure.

The dosage for this medication is between 1mg and 3mg a day, a lot of the pots Facebook members said that they found this tablet helped them best if they took it first thing in the afternoon and it could take up 6 months to see any improvement in their symptoms.

I personally would consider trying this drug as if it can even help with my dizziness a little bit it will massively improve my life.

IV SALINE THERAPHY

Out of all the drugs that are used to help pots sufferers this seems to be the one that is the most talked about and desired on the pots Facebook. People have said that when they have gone into hospital and had this it makes them feel normal for a few hours or days. There are some patients who suffer from pots so badly that they will have the IV at home, usually thought a chest port and that this has dramatically changed and helped to improve their lives. Because we have to drink a lot of water and take a lot salt just to be able to function, if you have an IV saline it is like an instant hit of salt and water and as it goes straight into the vein it works almost immediately.

The only down side is it really hard to get your doctors to consent to having a home port IV saline as there is risk of infection. I like many other ‘poties’ would love to have this at home and would take the risk of an infection, just to feel normal again but it is very unlikely I will ever get one so guess I will just have to stick to guzzling water and eating salt all day, I know my life is so fun lol.

SSRI DRUGS

These drugs can be used to help pots patients who are suffering with depression or anxiety. I am actually taking Citalopram, 10 mg a day, for anxiety.  These tablets are actually helping me be less anxious as there was a time just before I was diagnosed with pots I was really dizzy and was regularly fainting and this made me not want to go out. I felt like I was just going to faint and be unable to have a normal conversation with anyone due to me feeling dizzy. I was actually told that all were symptoms were due to me being anxious and depressed when I was put on these tablets and diazepam  by my GP, so when I knew something was not wrong I thought I was going crazy which made me more anxious. When I finally went to a good hospital after fainting and injuring myself I was eventually diagnosed with pots, which did help me feel a bit better but I do not yet feel ready to stop taking the anxiety meds as I feel I still get scared at times of my new life.  I found that a lot of pots sufferers suffer from anxiety and take different SSRI tablets and they do find them useful as well. I am going to be starting cognitive therapy in the next few weeks so I am hoping this will help me and then I will slowly be taken off these tablets.

The side effects I first got from taking these tablets were headaches and feeling a bit nausea but you can also feel really tired and gain weight as side effects as these tablets.

Non medication treatments

Water intake and salt intake

Since I have been diagnosed with pots I have had to increase my water intake to about 2 litres a day and majorly increase my salt intake. To be honest I have found it annoying to constantly be drinking water all day but I do feel that it really helps. The first thing I do in the morning is have a big glass of water and it just makes me feel like a can function. With regards to the salt I have noticed that if I have not eaten any salt in the day then I feel much more dizzy than usual, so for me it really is important that no matter how much I don’t like drinking so much water it really is a necessity if you have pots.

Cognitive Therapy

Now having therapy is not going to cure you and won’t help make a dramatic change in your symptoms but I think that just taking to someone about how your feeling can help. I am starting this therapy next week so I will do a blog on how I found it and if it helped.