New UK member, hoping I will get better

Member Stories
#21

Dear Pianist_will,
Sorry about what you are going through. The first thing to tell you is don’t despair. Hang in there. I am no expert on sexual dysfunction with PFS. I was spared the sexual dysfunction but had bone breaking depression for 6 weeks initially followed by even worst anxiety and tinnitus (ringing in the ears) the past 3+ months. I had 4 months where most days were a living hell. I tried to find ways to deal with it. With some advice from doctors listed on pfsfoundation.org, I hanged in there, and now 5 months out, my symptoms are milder and very very slowly improving. Many days are still tough, but I don’t have that devastating depression or anxiety which made life a living hell. This syndrome takes a LOT of patience, but I think most people do improve very slowly over time. It has been the case for me. I remember feeling EXACTLY like you describe in late May/early June when PFS first hit me. I had a normal happy life. Then suddenly my life became living hell. I kept thinking, how could this have happened to me? I had read about potential side effects of finasteride in detail before starting it and there was no mention of PFS. I was devastated, just like you are now. It is still hard, I won’t pretend it is anywhere near over, but it is much more bearable and I have occasional happy days. Hang in there. We have all been through what you are going through. Be patient, very patient, it will get better. All the best.

Giatriko

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#22

Hi Giatriko,

Thanks for the message buddy! I am sorry to hear you are going through this too.

We actually share a symptom - tinnitus! I have had the worst tinnitus for the past few weeks, it has been crazy and scared the life out of me. It is really is awful. How have you been doing with the tinnitus? Any improvements?

I suspect mine might actually be due to antibiotic - ciprofloaxin - but I can’t for sure rule out finasteride. If it is finasteride, its taken over 2 months for it to come which makes me think antibiotics.

I really really hope the tinnitus improves, its been driving me crazy. I know how to sleep with a white noise machine in my room and its totally rubbish not being able to enjoy silence again. I’m not sure whether the ear itself has been damaged by the medicine or whether its more the effect on the brain. I know that the GABA receptors of the brain are affected by ciprofloaxin and finasteride. Also, when I take a sleeping pill, the tinnitus decreases which again suggests GABA receptors. For the time being, I am just gonna to stay off all meds and hopefully my brain and the receptors will recover and just sort this all out.

Good to hear your on the mend dude. I think you probably have a good prognosis/outlook if you are improving and its only been 5 months or so. I expect by the end of your first year you will be much closer to feeling like your old self.

Take care mate, and let me know about your tinnitus.

Will

#23

Your spot on Will
I’m on biologicals humira it was working well but like alot of things it is loosing its effect my rheumatologist is considering putting me on weekly injections rather than biweekly.
I can’t move away from Humira as it’s the only biological that controls the colitis i have been blessed with due to years and years of Nsiad abuse.
Thanks for the info and looking out for me though mate it’s much appreciated.
I will keep my fingers crossed for you with the viagra mate ive been in this predicament for years its not easy but we find ways to get around things :+1:

#24

Didn’t realise you had colitis too mate - definitely stay away from secukinumab then because it can make that worse. Do the weekly injections of humira and if that doesn’t give you substantial relief, it might be worth trying another TNF inhibitor - infliximab, golimumba, or certilizumab. Do you have options mate.

Also, Ank Spond and other autoimmune diseases are being researched intensively so I feel confident you will always have treatment options in the future. Perhaps even cures? This is what is so frustrating about PFS, the research is very limited and that can make people lose hope.

#25

The tinnitus has fluctuated. I don’t believe it is inner ear damage. I think it is a result of anxiety. When PFS first hit me in late May, the first symptom was severe anxiety and severe tinnitus which came all of a sudden. Then by mid June, after I took buspar for the anxiety, the anxiety turned to severe depression. The tinnitus resolved completely. In fact it didn’t return until August when my anxiety returned. From mid June to mid July I had severe depression, then 2 weeks of feeling great, then in early August anxiety/tinnitus returned. If my tinnitus was due to ear damage, it should not have gone away completely from mid June to early August. At present it follows my anxiety. When my anxiety is bad, the tinnitus is bad. When I have good days, the tinnitus is not noticeable and for short times when I feel the greatest I have none. Other PFS sufferers have reported their tinnitus resolving when other symptoms resolve so I am hoping that one day the anxiety and tinnitus will resolve.

#26

I suspect in your case too the tinnitus is due to finasteride. I quit finasteride in March of this year, and the anxiety/tinnitus hit me in late May, more than 2 months later. I had no tinnitus when I was taking finasteride. I took finasteride for 2 months (Jan - March 2018) and I stopped because I had developed inexplicable anxiety.

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#27

Hi Giatriko,

Sounds like you are doing all the right things. Interesting to hear that you tinnitus may be linked to the anxiety and it tends to vary in line with this. My experience is sort of different unfortunately and I have had no periods of it being absent and it is continuously there. I also feel like it has been getting worse.

For me, it really feels like it is in ears and not the head so much. I am worried that my ears have been damaged by the drugs in some way. I don’t think my hearing is affected, not noticed much difference in my day to day life in terms of hearing music, taking to people, etc. But I believe hearing loss happens at the high frequencies first so its possible.

So our experiences of tinnitus are kind of different and I do still suspect it is the antibiotic. There are horror stories with Ciprofloxain and it seems to cause lots of nerve problems with a small number of people. I just seem to be one.

Still hoping for a full recover, it does sound like people get better after being ‘floxed’. Not everyone but, but a lot seem to improve. Fingers crossed. Keep me up to date with how you get on.

Interesting to hear about your anxiety treatment, I’ve been doing some reading about it. There is an over the counter treatment in the UK similar to silexan - Kalms lavender oil 80mg treatment. Do you think this is similar to what your are taking? Are you on the 80mg dose? I might be tempted to give it a go myself since I’ve had bad anxiety issues too.

#28

I am not sure if it (Kalms) is the same as silexan, I suspect it is. It is widely used in Germany under the name Lasea. I live in the US and here the trade name is “CalmAid”, but the chemical name is Silexan. I checked with a Swiss doctor who informed me that Lasea and silexan are the same. I suspect that “Kalms” is also the same, particularly if it comes in an 80mg capsule. You can look at the Kalms box and in the “active ingredients” it may say silexan. You can also ask the pharmacist. I have been very happy with the results. The usual dose is 80mg daily (one capsule). I have to say that I take 80mg twice daily. Why? In the study of Lasea where it was compared to Paxil (one of the most commonly used anti-anxiety/anti-depressant SSRIs) and placebo, Lasea was used at 40mg, 80mg and 160mg. The patients taking 160mg did the best and their side effects were the same as placebo, just like the 80mg dose. In addition at the completion of the study, the researchers had patient discontinue Lasea abruptly to see whether there would by any discontinuation syndrome, any withdrawal symptoms, any rebound anxiety as happens with benzodiazepines like alprazolam. Patients quitting Lasea had no withdrawal symptoms, no rebound anxiety, no other issues. That is why it has been approved to be sold over the counter. Aside from helping me with my anxiety, I think an even greater benefit for me has been at it seems to have cured my insomnia. In late August and into September I had developed terrible insomnia which made my anxiety worse. I took lorazepam which helped me sleep but the following day I was even more anxious. I started Lasea in early September. After 3-4 weeks I started sleeping better and better, and now in my 8th week I am sleeping like I haven’t done in ages. I avoid caffeine and drink chamomile in the evening and this has also helped along with Lasea. (I keep saying Lasea but what I am actually using here in the US is “Silexan” - CalmAid).

One thing about Lasea is that unlike benzodiazepines which give an instant relief of anxiety, it takes 2 weeks of taking Lasea to start seeing the benefits. It took closer to 3 weeks for me. But after that, every week seems to be slightly better than the previous one. With PFS I am very happy with slow but steady improvements. My last day of severe/debilitating anxiety was September 24th. Prior to that it was almost daily. Since then my anxiety has been moderate to mild, rarely mildly painful but never truly severe. Hope it helps. All the best.

Giatriko

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#29

This is really interesting mate. Not sure I can get access to Silexan in the UK. I’ve just googled the ingredients for the Kalms product and it just say:

Active Ingredient:

Lavender Oil

Ingredients

Active Ingredients: Per soft capsule: 80 mg of oil from flowering tops of Lavender (Lavandula angustifolia Miller, aetheroleum)

So no idea if this is Silexan or whether it would have the same effect. I presume it is the same because when I google the Kalms product, there are lots of press articles talking about it and saying what a powerful effect it has on anxiety. So presumably the press is saying this product is now on the market hence why the are running the articles. The dose the same as well.

I might give it a go, my anxiety and moods have been crazy since this all start. And I don’t want to be on any pharmacolgical med (well, maybe tadalafil). Has it improved your mood too? Have you noticed any side effects at all? Do you think its helped with the tinnitus at all?

#30

Kalms is Silexan. That is what silexan is, 80mg of oil from flowering tops of Lavandula angustiflolia. It is the same thing.

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#31

Thats great! I’ll try to get some tomorrow. I’ll start with the 80mg dose and see how I do for a week or two and perhaps up it to 160mg.

#32

My anxiety has improved significantly. Depression was not as bad as my anxiety but it has improved too. I have had no side effects, just like the patients in all the studies had no side effects. The only side effect I had (which the patients in the studies also reported) is occasional mild “burping” which has a lavender sent and which is not at all unpleasant. A few patients in the studies reported very mild and transient stomach upset. In all the studies done, lasea side effects were the same as placebo. If you google “silexan clinical trials” you can see the studies and the results, side effects etc. That’s what I did before starting silexan. I was very impressed by what I read, and now 8 weeks into taking silexan, I am very happy with the results, both in how my anxiety has improved, and how I can sleep through the night very well. Hope it helps you too. I have little doubt that it will. You will just have to be patient as it will take 2-3 weeks before you notice the changes. Then, just like it is reported in the clinical trials, the improvements seem to increase week by week on Silexan. Every week seems to be slightly better than the previous week though there will always be some ups and downs. Overall there is a very slow but steady improvement. I couldn’t be happier. Nothing has been as helpful in my battle with PFS. All the best.

Giatriko

#33

Thanks Giatriko!

Can I ask who was the doctor you saw who recommended the treatment? Was this someone who specialises in PFS? Did you get their name off the PFS foundation website?

Don’t feel you have to share but if its someone who may be able to help me I would be interested to know. I have sexual side effects too so it might be worth me speaking to them potentially. Did you say they were in Germany?

#34

I would be interested in knowing who this doctor is too Im going to Germany after Christmas this would be the perfect opportunity to see a specialist doctor as the doctors in the UK seem to be behind on times to put it politely.
I too have had sexual side effects the anxiety issues and memory issues non of which seem to improve with time. I have been taking CBT oil this has helped the anxiety but nothing else.
If you know of a specialist please pass on any information.

#37

since i cannot find it in italy, i’m using lavender oil. does nothing…

#38

Sorry it’s not working for you Sonic. I suppose like most things, it doesn’t work for everyone

#39

have you tried it? lavender oil or silexan?

#40

I take Lasea now for 2 weeks, even after the first week my stress/anxiety got much better. I bought it over amazon.de without problems.

#41

Pleased to hear you found something to get a bit better Zodiacs :slight_smile:

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#42

So a bit of an update. Ups and downs really …

The biggest up is a slight improvement in erection quality. In particular, the erection feels a little bit stronger and closer to fully hard and perhaps I can maintain it slightly longer without stimulation. These are very small gains really but have actually made a big improvement to my state of mind! I am still a very long way from normal though. It still takes ages to get an erection with stimulation and no way I am getting any spontaneous erections.

Hard to know what to attribute this slight improvement to. I’m hoping it could be the fact I’m three months off finasteride and the penis is simply slowly repairing. Although I did start quite a strong vitamin D supplement last week (blood test showed I had pretty low levels) and the improvement does seem to coincide with this. So its possibly due to the vitamin D? I’ve got a course of vitamin D tablets, I need to take one a week for several weeks so will let you know how I get on.

On the downside, I’ve got my testosterone blood tests have come back and they have decrease from 14 to 12. This takes me from the ‘low normal’ category to the ‘borderline’ category. I really thought after 3 months being off finasteide my testosterone would be rebounding a bit towards the mid range. Of course, its entirely possible that my testosterone was always kind of low and this is just my ‘normal’? Not sure.

I’m going to see the Swindon Urologist tomorrow who has access to the shockwave. Lets see what he says. My initial thinking was to just give the shock wave a try but now I’m starting to wonder if the testosterone result will change the treatment approach a little. I’m not sure, he seemed to think my testosterone was fine last time. He also didn’t really believe in venous leakage. Hm … it is bloody hard trying to find proper professionals to help with this condition! Will keep you all updated.

A little off topic, I’m still in a lot of pain from the ciprofloaxin toxicity. Nerve pain, tinnitus. I’m actually finding these side effects harder to deal with that the finasteride. Hoping these will settle down a bit too with time. My left arm is the worst effected pain throughout the day and feelings of numbness which is very scary.

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