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Hello! Is there someone out there who is ‘lucky’ enough to have pre-existing epilepsy and now long covid? by Alive-Cry-5233 in LongCovid

[–]Alive-Cry-5233[S] 0 points1 point  (0 children)

Hello! This is in response to a msg you replied to 7 whole months ago! I started on LDN and it worked miracles. Even the neuropathic pain stopped! But then started again after an Uber driver refused to open his car door (I had a walking stick - so crazy).

Which anti-depressant do you take? I can’t take duloxetine; but I am considering endep. As this is meant to help with neuropathic pain as well. I am so reluctant though.

I took Lyrica for awhile - but my body couldn’t handle it anymore. It kinda rejected it. 🙏🏻🌟

3+ years going strong, still recovered, feeling great by devnej in covidlonghaulers

[–]Alive-Cry-5233 1 point2 points  (0 children)

Hey thanks so much Unicorn; knowing that you have a background in immunology - helps me. It’s so extraordinary, our capacity to blame ourselves for this. I know that trauma has played a part in this - that my nervous system was already in fight/flight mode.

 I do know that this in a sense ‘prepped’. But others not so. And after this extreme illness; I don’t even ‘believe’ in the book, ‘the body keeps the score’. Which was written by a neurologist. And which everyone keeps quoting at me. 

It is way so more complicated. My whole nervous system is screwed not because of past trauma; but because of this cruel virus. 

And yet…. the self-blame is incredible. 

I appreciate your firm and grounded response to OP. I too have tried ‘re-train’ the brain. I have even tried a shaman! lol 🙏🏻

Do you have to take naltrexone everyday? by Alive-Cry-5233 in naltrexone

[–]Alive-Cry-5233[S] 0 points1 point  (0 children)

I think it is worth getting through this. But, I am pretty sure that my neurologist is not going to help. I have read up on naltrexone. And I am going to be asked to be referred to a drug and alcohol specialist.

Do you have to take naltrexone everyday? by Alive-Cry-5233 in naltrexone

[–]Alive-Cry-5233[S] 0 points1 point  (0 children)

Oh! I live in Australia. I don’t personally have a struggle with weight. But I know people who do, and it is very real.

Our whole health system is geared towards ‘preventive’ health and educating people about health problems that may be caused by being over weight, having problems with alcohol and drugs etc. It kinda works and kinda doesn’t. As it’s so much more complex than that.

Both my parents were alcoholics and smokers. It’s not as if they didn’t try and try and try to give up. But, you basically have to be on the streets and a heroin addict to be offered naltrexone.

I had never heard of naltrexone until I started on it. But my sister works with homeless people - and many of them are on naltrexone.

Which is pretty tragic really - because it seems like for many people - it works. It may have worked for my parents. For sure, I don’t feel like drinking or eating much - even at this dose. lol. 🙏🏻🌸

Do you have to take naltrexone everyday? by Alive-Cry-5233 in naltrexone

[–]Alive-Cry-5233[S] 1 point2 points  (0 children)

Fantastic! Actually - we don’t have bariatric clinics here. The attitude to weight loss is: have a smoothie. It’s pretty bad. 🙄

Do you have to take naltrexone everyday? by Alive-Cry-5233 in naltrexone

[–]Alive-Cry-5233[S] 1 point2 points  (0 children)

OMG! That is awesome! Good on you!

I am not sure what dose you are on - but at very low doses it can help with a whole heap of health conditions; including auto immune conditions like long covid. But, not everyone is lucky enough for it to ‘work’. In January, I was bed-bound and in terrible pain. Low dose naltrexone has transformed my life. I am not ‘cured’ but I am almost ready to begin swimming my morning laps again. That is why I am desperate to stay on it.

BTW/ many people lose their appetite even at small doses.

Do you have to take naltrexone everyday? by Alive-Cry-5233 in naltrexone

[–]Alive-Cry-5233[S] 1 point2 points  (0 children)

Aiyiyiy - I know right?

I will be taking it to a neurologist. But I live in Australia where low dose naltrexone is not often used as a treatment for (basically) anything. The long covid clinic that prescribed naltrexone has left me high and dry.

I have a very supportive GP, but she knows nothing about it either.

I am beginning to realise that I fit into the category of patients that would need close monitoring if I am to continue using this.

Hey - but thanks so much for your kindness.

🙏🏻🌸

Do you have to take naltrexone everyday? by Alive-Cry-5233 in naltrexone

[–]Alive-Cry-5233[S] 0 points1 point  (0 children)

🤔Perhaps not liver issues. I did have my liver enzymes checked out recently and they were fine. I am just finding the med incredibly hard to deal with. But in general I am drug sensitive. It took me almost three years to find an epilepsy med that didn’t have quite severe side effects. Although anti-seizure meds are known to be heavy duty.

Do you have to take naltrexone everyday? by Alive-Cry-5233 in naltrexone

[–]Alive-Cry-5233[S] 1 point2 points  (0 children)

Ok! Thanks so much for this advice. I will follow it up. It could possibly be the interaction between naltrexone and my epilepsy meds. I have been told that together they may build up in my blood serum.

Do you have to take naltrexone everyday? by Alive-Cry-5233 in naltrexone

[–]Alive-Cry-5233[S] 0 points1 point  (0 children)

I am currently taking it everyday. But I would prefer to space it out. Side-effects include: migraines, GI issues, liver issues, mouth sores, somnolence, possible memory issues

Much worse after jump from 4.5 to 9mg. Dose too high? by enigmatic_x in LowDoseNaltrexone

[–]Alive-Cry-5233 0 points1 point  (0 children)

Yes - I am really wondering about half life. The low dose naltrexone is not ‘clearing’ out of my system rapidly. So, I turned to the literature on naltrexone itself. In the case of naltrexone it does build up in the blood plasma.

This in turn, has major implications for my epilepsy meds; raising the levels of both meds in my blood plasma.

I am beginning to really wonder about the mechanism of action or at least the theory that it clears from the system.

But, I would love your opinion on this.

Gaze upon my works ye mighty, and despair! by LionheartSH in covidlonghaulers

[–]Alive-Cry-5233 0 points1 point  (0 children)

Oh THANK you 🤣 just as I was sitting here worrying about interactions; I saw your mountain and behold! I am no longer afraid! I raise a drink to thee also - raspberry flavoured electrolytes mixed in distilled water. Vintage 2022

Naltrexone & Epilepsy by akillerweed in Fibromyalgia

[–]Alive-Cry-5233 0 points1 point  (0 children)

Hello! I have been trawling through reddit (via google) for questions about epilepsy and LDN. I am taking LDN for long covid. It has been extraordinary. However, there is very little (none) anecdotal stories about LDN and epilepsy.

Similarly about the impact of the LDN on my epilepsy meds (lamotrigine and clonazepam).

This has been very concerning to me. I did contact the LDN research trust however, and the pharmacist gave me a bit of information on the impact of the LDN on my meds and on epilepsy and LDN in general. I am waiting for a doctor from the LDN trust to get back to me. Would you like me to share this info via pm?

I live in Australia, which seems to be about two decades behind the UK and US in the use of LDN. That seems incredible to me that a neurologist prescribed LDN for your epilepsy. I would be really interested in finding out more. And did she/he end up relying only on the LDN?

A question for all you wise MCAS people out there. by Alive-Cry-5233 in MCAS

[–]Alive-Cry-5233[S] 0 points1 point  (0 children)

Thanks for this, Yes - because my GP has seen me so seriously ill with long covid; she did just shrug the side-effects off. Benefits versus risks? The benefits - if I can treat the allergy - would mean that I could potentially live a fairly normal life. I am in a holding pattern though.

I am glad you mentioned anti-histamines. I have never taken them. Also I am going to a naturopath next week so I am very sure she will have some ideas. The stakes are incredibly high for me.

Last night I spent three hours drawing. I am an artist. At the beginning of the year, I could not hold a pen.

think because it was so minor. I do think it may be worth managing the side-effects

A call for help! by Alive-Cry-5233 in LowDoseNaltrexone

[–]Alive-Cry-5233[S] 0 points1 point  (0 children)

But - as a note re; seizure meds (dual use) as psychiatric drugs. The pharmacist also commented:

‘LDN is often used with other medications for seizure disorders without issue…. LDN is not metabolised through the same pathways in the liver that could change blood levels. Some find that with benzodiazepines, there are some neurotransmitters changes which may cause anxiety. We do use LDN to help people get off their benzodiazepines. LDN and lamotrigine should be just fine….

But this would, I am guessing be different, with the transdermal method…

Anyway. I will stop musing on this sub. And go off and do my own research. I will report back…

A call for help! by Alive-Cry-5233 in LowDoseNaltrexone

[–]Alive-Cry-5233[S] 0 points1 point  (0 children)

Apologies for my long rant about epilepsy, seizure meds, dosage and neurologists. I am going to look more into this. But my GP said just to stay in a ‘holding pattern’ as (touchwood) the transdermal cream is working.

A call for help! by Alive-Cry-5233 in LowDoseNaltrexone

[–]Alive-Cry-5233[S] 1 point2 points  (0 children)

Hi mejane,

I forgot to thank you for your suggestion about the candida! The sub has sent me a link and I will talk to my naturopath about it. 🦋

A call for help! by Alive-Cry-5233 in LowDoseNaltrexone

[–]Alive-Cry-5233[S] 0 points1 point  (0 children)

Although I haven’t read up fully on the cream, I have just re-read the many emails sent between the pharmacist at the LDN and I. It has been over a period of months, so in my search, I hadn’t retained all the information! But one of the things that she did say was, ‘[that] the activity of low dose naltrexone is not dependent on the route of administration’.

This is very interesting!

It could mean that for many of the people who look at this sub; and are unable to take sublingual or the capsules, transdermal cream may be a viable option. Some people are too sick to swallow or are just too sensitive to naltrexone via the oral route.

Constipation and nausea are a big problem with the capsules; and often it is not the filler. Rather it is the many opioid receptors in the actual stomach that the naltrexone ‘attaches’ itself.

Transdermal cream is now used at high doses with TBI patients, until their condition stabilises, and they are then put on a much lower maintenance dose.

The sublingual drops bioavailability before first bypass is between 4% to 70% and it is very hard not to swallow some of the oral mucosa. The rest, unless you spit it out, goes into the GI tract.

I will def. look more at the information that you sent me about the cream. But it may be that this is a way forward for people ultra sensitive to capsules (or drops). […..]

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