Poss having issues with medication post surgery with....

[UncleSteve]

I'm possibly having issues with my medication after surgery with jerking in my legs at night.

Lets start with a little medical history:

I have Marfan Syndrome and Scoliosis.
1997 Aortic route and valve replacement.
2008 Endocarditis
2014 September Surgery to replace Mitral Valve.
Repair Tricuspid Valve
Repair pseudo aneurism which had developed between the Aorta graft and metal Aortic Valve
originally done in 1997

Since 1997 I've been medicated with...
Warfarin
DHC Continus 60mg tablets for Scoliosis

Since last surgery in 2014 I've been medicated with...
Warfarin
DHC Continus
Rabeprazole 20mg gastro-resistant tablets
Carvedilol 3.125 I did try 6.25 but they knocked me out
Losartan Potassium 50mg

Right...
I stopped taking the Losartan due to side effects. Cramps in legs, fuzzy eye sight, cloudy urine, unusual bruising, very puffy legs and they knocked me out. As soon as I stopped, almost all the cramps stopped, and I returned to a reasonably normal status.

However... I've now gained a very annoying condition where in the evenings and at night I get a very sharp pain in either one of my legs, rather like a sharp needle being shoved in (yes I've had the real thing to know what I'm talking about), then about five minutes later I get single jerks of my leg or both. These are like a single electric shock (yes again, I've had the real thing, can happen when being an electrical engineer), so the jerks are quite powerful, so much so that I've hurt my spine a few times. This state can carry on for several hours. Sometimes if I go for a short walk, the jerks stop. My legs feel as if they're under tension, then seem to snap with the electric shock type jerk. I don't know if you've seem anyone being de-fibbed, some of my jerks are rather like that!

I have consulted my doctor who thought is may be restless leg syndrome, however that's what my wife has, and its nothing like that. I'm currently waiting for an appointment to go to hospital for some tests on my legs, but that may be months away.

If I accidentally miss to take my DHC I can have the same conditions, which go away after taking the DHC.

As I had issues with the Losartan, I wondered if I may be getting some sort of side effect from the Carvedilol, so also stopped taking that several weeks a go (along with the Rabeprazole). So far not seen any improvement in my nightly episodes. Could I be suffering from after effects of taking a particular drug?

Having visited my cardiologist several weeks a go, and pointed out that I'm not compatible with the Losartan, he's suggested I something similar. I've yet to try the new medication as I would really like to get to the bottom of why I'm having the issues with my legs.

Has anyone else been through this, and what improved your situation please as I'm finding it very unpleasant?

Thanks in advance for any help and suggestions.

 

[Texanbarbie]

Hi Uncle Steve,
I've been on Losartan 25 mg. for 4 years and the only side effect I may have is that I bruise a lot easier, however, I'm also 63 years old and my skin is a lot thinner. Due to all your heart issues, I would definitely start taking another blood pressure medication. I don't know much about your leg pain/jerks, but if they go away after taking the DHC, well, I think I wouldn't miss taking the DHC. Good luck.

 

[UncleSteve]

Bit of an up-date. My GP sent me off to the local hospital for some tests at a 'Nerve conduction/EMG clinic' what ever that means. I thought they would work towards sorting the situation out, however the woman connected up some wires to my legs and gave me electric shocks, then told me that my nerves in my legs are damaged, then kicked me out saying to contact my GP in about two weeks.

So now need to wait and see what the GP has to say.

 

[Jkm7]

It is good you are having neurological testing. Sounds possible there could be a neurological condition going on. At least it is a way to eliminate that if not the case.
Best Wishes. Hope you get some relief soon. It doesn't take long to get results of an EMG test. Your primary care doctor should have a report soon. EMG tests are rough but they often give some helpful information.

 

[UncleSteve]

Well I'm no further forward. Went to my GP who said she did not know of anything to make good or better my jerking situation, so a bit stuck.

 

[Jkm7]

Have you seen a Neurologist?
A GP is not often well versed in neurological conditions as well as a specialist.

I'd be seeing the neurologist, were it me.
Best Wishes

 

[UncleSteve]

Hi Jkm7, I've not been offered anything...
I have been taking Glucosamine Sulphate 1500MG, However my wife has been visiting a private physio who was telling her about various things, of which the physio said for GS, you need to be taking at least 2000MG daily for it to do any good. So I've purchased some 300MG to take with my 1500MG, and strangely my jerking seems to have stopped. Its early days so far.

 

[AZ Don]

I've not been offered anything...

Good that your symptoms seem to have stopped. If they come back, don't wait for your Dr. to offer something. Tell him/her that you want the name of a good neurologist, or better yet, look on healthgrades.com and find one yourself. The reality of the healthcare system these days is that it is best to be on top of things yourself. Dr's don't always have the time or the breadth of knowledge required to figure everything out.

The symptoms you describe reminded me of epilepsy, and indeed in looking at the list of symptoms for epilepsy, they include: "Uncontrollable jerking movements of the arms and legs". I'm not saying I think that's what you have, but epilepsy is a neurological disorder and so I agree with the advice already offered to see a neurologist. Also, when you mentioned that it was suggested you have restless leg syndrome but your symptoms were not like your wife's, my first thought was that not all diseases manifest the same in everyone.